Meet Our Community

November 16,2007 was that day I rushed my 3 mo old so to the hospital because of sudden breathing problems. The nurse in the ER took one look at him and grabbed him out of my arms and ran down the hall another nurse told me to follow and took off running. When I got into the back section of the ER, there were so many people around the bed I couldn’t even see Alex. I heard one of the nurses asked “who’s running this code”? With those forwards my life changed forever. Alex was born and the pediatrician congratulated me on the birth of my healthy baby boy. Nobody suspected. As time went on Alex did sleep a lot but that’s what babies do. Looking back at pictures I see how pale he was, but i saw him every day so it didn’t trigger any alarm. His father is very caucasian and it was winter so we didn’t go outside.. Then one day he woke up not breathing right. After some discussion his father and I took him to the ER. We passed three different hospitals on the way to the hospital where he had been born because I knew his pediatrician had privileges there. By the grace of God that hospital was also the only Level 1 trauma Center in the county and is undoubtedly the only reason he’s still alive. He went to full respiratory and cardiac failure within moments of reaching the hospital. It took several days as they tried to figure out what was wrong. His RBC was 3. Everything else was normal. By process of elimination they finally diagnosed Alex with Diamond Blackfan Anemia of “unknown origin “ we were tested but were not found to be carriers and no one on either side of the family had ever heard of such a thing. In the weeks and months to follow I learned about DBA. Back 15 years ago there wasn’t a whole lot yet on DBA but I took in all that was available. Alex started and failed the transfusion protocol. He became severely allergic to all blood products . He also failed the steroid protocol- three times. In June 2009 at 18 months, he received an unrelated bone marrow transplant. It undoubtedly saved his life, but it also changed it forever. Alex had suffered brain damage from oxygen deprivation at the onset of his diagnosis of DBA before we even knew..He had presented with a hemoglobin of 3 and that brought with it permanent brain damage similar to someone who has experience a water drowning… basically it’s the same thing. Oxygen carrying cells aren’t getting to the brain. The transplant, though successful, caused his body to start attacking itself. But even with the challenges, it’s giving us 13 more years and counting and I never get tired of looking at lab tests and seeing a normal hemoglobin! Everyone’s DBA journey is different. This is ours. So much more research needs to be done on this illness. There is life after a DBA diagnosis. A beautiful life. In a way we’re kind of lucky because we know not to take a single day for granted.

My story is a bit different than others because I wasn't diagnosed until I was an adult. I was diagnosed at the age of 32 after nearly a decade of blood transfusions and treatments, including chemotherapy for various other suspected disorders and illnesses. My mother recalls that I was always a little anemic as a child but never enough to need blood transfusions. Living in a small town in Maine, doctors were not familiar with Diamond Blackfan Anemia. After doctors were left literally scratching their heads because they couldn't figure out the cause of my bone marrow failure, I was finally referred to the amazing team at Boston Children's Hospital and received the correct diagnosis of DBA. They suspect that a pregnancy was the trigger of my severe episode of bone marrow failure. I began steroid treatment and chelation therapy and have been tranfusion free since 2016! After receiving the diagnosis, the team in Boston also completed genetic testing for my son, who was born premature and with a cleft lip and palate. They did confirm that my son also carried the same gene for DBA. He is currently on steroid treatment as well and has only needed 1 transfusion. We are so thankful for the amazing team in Boston as well as for the Diamond Blackfan Anemia Foundation that have helped us to live active and healthy lives living with DBA!

In December 2021 we took Amelia to her pediatrician due to her just not acting like herself (running temps off/on, not playing, hardly eating, wanting to be held a lot and sleeping a lot). Her Dr ordered some blood work to be done and said it wouldn’t take long to get the results and she would call us with the results before she left for the day. So we did the blood work, left and literally had just gotten inside of Hobby Lobby to grab some Christmas stuff when my phone rang. Her Dr said we needed to head straight to the ER because her hemoglobin was 2.2 which is dangerously low. We headed to Vanderbilt Childrens Hospital and they ran even more tests on her, admitted her to the PICU and started a blood transfusion. They would check her hemoglobin every few hours to see if it was going up. Then we busted out of the PICU and was sent to a room on the oncology/hemotology floor for a few days. Her hemoglobin wasn’t doing what it should be doing so they decided she needed a bone marrow biopsy done. They couldn’t get her in for that for a few days so they decided to send her home because they were happy with where her hemoglobin was after the blood transfusion. They did the biopsy it came back no cancer but they were still puzzled due to the fact her bone marrow isn’t making red blood cells like it should. Several Dr visits and blood transfusions later we finally have an answer to what is going on. In April two days before her 2nd birthday she was diagnosed with Diamond Blackfan Anemia. Diamond Blackfan Anemia (DBA) is a rare blood disorder. In DBA, the bone marrow (the center of the bone where blood cells are made) does not make enough red blood cells that carry oxygen throughout the body. To treat very low red blood cell counts in DBA are corticosteroids and blood transfusions. Bone marrow/stem cell transplantation may also be considered. Other treatment options are being studied but to date none work as well as corticosteroids or transfusion therapy. The goal is to one day find a safe, reliable cure. But this is still many years away. For a rare disease like DBA there are typically too few researchers to push research forward. As of right now Amelia is on a steroid and doing very well on it. She hasn’t had a blood transfusion since March. She gets blood work done every week to check her hemoglobin. I hate to say she has gotten so used to it that she doesn’t even cry when it’s done anymore. She sits there like a big girl and just watches what they are doing. We still don’t know a lot about DBA and we are seriously just taking it one day at a time! So if you could just keep praying for our sweet little girl and our family.

Amelia was diagnosed with DBA at two months of age. She was initially treated with high doses of prednisone but is now transfusion dependent and has been since the age of three. She receives blood transfusions every three weeks and while it hasn't always been easy, Amelia has been able to do all the "normal" things growing up. She never lets DBA stop her from doing the things she loves. She is currently a freshman in college and has plans to pursue a degree in Nursing.

Anders was diagnosed at age 2 months, like so many others. He was steroid dependent for 13 years until the side effects of steroids became unmanageable. In July of 2021, he underwent a stem cell transplant with his older sister, Avery as the donor. Now a year later in 2022, Anders is doing very well and enjoying his life transfusion and steroid free! He loves exploring new places and making and listening to music. His friends and family refer to him as the Human GPS! Life is a roller coaster full of ups and downs, enjoy the ride!

My husband and I were blessed to have fraternal twin boys in December of 1998. That’s when our lives changed. Michael was the first to greet us. Jim and I were so excited and we were asking the Doctor is it a boy or a girl? She didn’t answer us so we asked again. The Doctor then replied, “I don’t know?” Jim and I were stunned. That’s where Michael and Andrew’s story with Diamond Blackfan Anemia began but we had no idea what was yet to come. Our fraternal twin boys were born with many health issues which in turn took us to many Doctors and Hospital’s from day one of them being born. We saw a different Doc almost every day of their lives for almost the first year. We eventually ended up down at A. I. DuPont Hospital For Children - Nemours in Wilmington, DE. where we met the twins Hematologist. I had our fraternal twins at the Geneticist one day when the Doc told me Michael looked very pale. She told me to take him to his Pediatrician and get his hemoglobin checked immediately. I did and his hemoglobin was down to 2.3. A normal hemoglobin is anywhere from 12-14. Michael was dangerously low. The Pediatrician sent us to Bryn Mawr Hospital’s E.R. where they contacted A. I. DuPont Hospital For Children and they sent an ambulance up for Michael and took him down to DuPont where his Hematologist entered the picture. They ended up admitting him. They did a lot of testing and Michael received his first transfusion. To this date Michael and Andrew have had over 300 transfusions each. After all testing was complete the Hematologist diagnosed Michael with Diamond Blackfan Anemia. Andrew was diagnosed months later. Michael and Andrew have many health issues. Our Andrew even had open heart surgery at 18 months of age. Both Michael and Andrew have had over 50-60 surgeries in their short lifetime. They have a long list of Doctors they see. They are followed by NIH, Hematology/Oncology, Cardiology, Nephrology, Endocrinology, Pulmonology, Gastroenterology, Opthamology, Urology and Orthopedics. Our boys were also born Developmentally Delayed. They have brains of an 8 year old. That just makes them extra precious to us. Around 13 years ago Michael’s bone marrow biopsy showed a presence of some funky cells. Since then our fraternal twins have had bone marrow biopsies twice a year to be on the look out for MDS - Pre-Acute Myeloid Leukemia. In June of 2019 Michael’s bone marrow biopsy showed the presence of MDS. It was time. Michael would have to have a bone marrow transplant. His HEMONC Doc at DuPont wanted him to be placed inpatient in December of 2019 but was worried about the flu so she waited. Michael ended up being placed inpatient at DuPont - Nemours in Wilmington, DE on April 16th of 2020. Right at the height of COVID-19. Can’t make this stuff up. Michael had a very tough time with his bone marrow transplant. His Mucositis was absolutely horrible. Doc couldn’t get over it but Michael has been truly blessed. He has continued his bone marrow transplant journey now at home. We are truly grateful he is still with us. Move ahead to June of 2021 where Andrew’s bone marrow biopsy showed MDS. Andrew was to be placed inpatient at DuPont - Nemours down in Wilmington, DE now too. Doc wanted him to be placed inpatient in November of 2021 but Michael had had major surgery and I could not be in two places at one time. Michael had a lengthy recovery so we pushed Drew to May 19, 2022. The difference between Michael and Andrew’s bone marrow transplant is that Michael was treated prophylactically for VOD - Veno - Occlusive Disease. Andrew was not. They do not do that now. They treat you when you show signs of VOD. Hence the nightmare Andrew is living today. As I am writing this Andrew and I have been in Nemours for almost 3 months. He’s been in the PICU for almost 2 months. He made it back to the Bone Marrow Transplant Unit for a day and a half but ended up right back in the PICU. Andrew has suffered from Acute Respiratory Failure, Pneumonia, Right lung collapse, Acute Renal Failure, Dialysis, Distributive Shock, Liver Failure, VOD, Bone Marrow Transplant acquired Type 1 Diabetes and more. He was on a vent for over 2 weeks initially and then has been put back on it intermittently due to surgeries and lung issues. He is currently on a vent and has been for days. God bless him he is wide awake - on the vent! Freaks me out but he has handled it gracefully.  Andrew has almost died on many occasions but has continued to fight.  He is such a fighter.  It breaks my heart to see all the suffering he continues to go through yet he continues to worry and care about everyone else around him.  Such a sweet, caring, loving, compassionate, old soul our Andrew is and has always been.  God bless him.  He continues to have times where he bleeds and it's to the point of him almost bleeding out so then they have to call another Massive Transfusion Protocol where they push red cells, platelets, FFP etc.  When he was bleeding on one occasion he ended up having to go to surgery and the Doctor ended up taking a foot of his small intestine out.  This was after another surgeon had already operated on that section of his bowel to try and stop the bleeds.  They continue to try and figure out why his insides are so friable and why he continues to bleed but have not come up with anything yet.  It just comes out of left field.  It is so truly frustrating and so heartbreaking for Andrew.  He has also not eaten anything in three months and he is just so hungry and it really gets him down.  Andrew continued to go through dialysis, being on a vent due to Acute Respiratory Failure, Pneumonia, Distributive shock, Liver Failure, Bone Marrow Transplant acquired Type 1 Diabetes and more for another month.  Andrew was inpatient down at Nemours in Wilmington, DE for four months total.  One month in the Bone Marrow Transplant Unit and the last three in Nemours PICU.  On Saturday, September 10, 2022, Sarah - Dr. Perry came to tell me that my sweet boys organs were shutting down.  I could not believe it.  I had kept my faith all this time.  Actually close to twenty four years because the twins have been through over fifty surgeries each and I always knew the good Lord had them.  Never did I ever think we would be here.  Andrew himself told me he was in God's hands before we left home and we were placed inpatient.  I responded back to him,  "I know Sweetie I just hope He brings you back home?”  God had other plans for Andrew.  On September 13th we had Andrew removed from his vent and the Doc's thought he would leave us within a couple hours.  Andrew had his own agenda.  The Pastor even said, "Well obviously Andrew is on his own timeline so I will be back later to see him!"  Andrew awoke from the meds on the vent and spent the next three days present with us.  Watching T.V. and his favorite Star Wars movies.  He even got to eat a few spoonfulls of a blue rasberry slushy:)  He was so happy about that.  His big brother Jimmy stayed with Andrew and I his last week and his father and Michael would come down and spend the days with us.  On September 16th Andrew slipped into a coma and never awoke again.  From September 16th on Jim, Jimmy, Michael and I stayed by Andrew's side.  It was Brutal!  He stayed with us until September 18th, 2022 till 4:45 p.m.   Andrew has blessed our lives in so ways.  We will miss his selfless, happy, caring, giving, loving and spiritual guidance.   Andrew's exit from this plane was a beautiful one and many shared in it.  When the Doctor said, "Time of Death 4:45 p.m." Andrew's PICU door handle jiggled and the door slammed.  Everyone's eyes opened wide. There was no one there.  I said, "That was Andrew's exit!"  A little later when I went out into the hall the Head Respiratory Therapist and the Head Nurse came running.  They were like, "Donna, Donna come here!"  Three months in the PICU we were all like family.  The Nurses desk was right outside of Andrew's PICU room so they knew when Andrew passed.  They were telling me that when Andrew transitioned they were watching Michael - Andrew's fraternal twin.  He was on the other side of Andrew's room wall.  It was too difficult for Michael to see Andrew in this state so Michael pretty much stayed in the Pocket Park looking at his phone and writing things down.  This is what Michael does.  So they continued to say that as they were watching Michael doing his thing on his phone after Andrew had transitioned, Michael's head all of a sudden shot straight up at the ceiling and he just continued to stare at it.  That did not surprise me.  I believe once Andrew passed he continued out of his PICU room - slamming the door to let us all know he was leaving and then went around the corner to his sweet twin Michael - touched him to let him know that he would be ok and then let Michael know that he would be okay without him.  I cannot think of a more beautiful, selfless goodbye.  Our sweet Drew.  Once again in the end thinking of someone else and no one more special then his twin.  God bless him.  I am also so very grateful for Andrew showing us that there is life after death.  He continues to send Michael and I many a sign and we are so truly grateful for each and every one.  Thank you so much Sweetie:)  Andrew and I have spoken about this on many occasions.  Drew is a very spiritual little dude and how I miss our spiritual chats:(  He is guiding me from the other side now.  Thank you again Sweetie:)  Andrew was selfless in another way in the end.  We let Nemours do a selective autopsy on Andrew.  We allowed them to take Andrew's lungs so they could bank them and allow Doctor's now and future researchers to look at them.  They had no idea what was wrong with Andrew's lungs.  If we can help them further medical education and also figure out what went wrong with Andrew's lungs and this in turn helps other kids in the future then that will make us all - including Andrew very happy.   I received a little info on Andrew's autopsy findings on his lungs.  It's looking like it could have been the TMA - Thrombotic Microangiopathies - that took him from us.  TMA is a well - described, potentially lethal complication seen in patients undergoing Bone Marrow Transplant.  Post Bone Marrow Transplant TMA is characterized by microangiopathic hemolytic anemia, thrombocytopenia and mutli - organ failure.  The term TMA defines a lesion of thickening of arteriole and capillary walls with prominent endothelial damage, subendothelial accumulation of proteins and cell debris, and obstruction of vessel lumina by fibrin and platelet - rich thrombi.  The association of post Bone Marrow Transplant and TMA ranges between 0.5 and 63.6%.  I had no idea it was this high.   It seems that Michael was spared because he had gone through a very toxic chemo regime.  That chemo seemed to keep the TMA at bay.  Andrew was given a less toxic chemo regime due to his heart issues which looks like in the end gave the TMA a chance to cause all this damage and shut down his organs.  I cannot believe we are here 🙁  He is so heartbreakingly missed.  Rest in Peace my sweet Angel. Michael continues to live on for he and Andrew.  He takes it one day at a time.  Who knows what DBA will throw at him next.  What cancer might come along next. There sure is plenty of them - Leukemia - MDS again, Osteosarcoma, Colorectal, Brain Tumors or any other kind of cancer now since he has had a Bone Marrow Transplant.  That's okay.  We live for today.  We stay in Gratitude.  Our boys are truly formidable.  Andrew still is in Heaven.  Michael will continue to be.  Whatever comes his way he will continue to handle with grace.  God bless our boys.  God bless you Michael.  God bless you Andrew.  God bless you Jimmy.  God bless all with DBA.

I was diagnosed with DBA at birth. I took steroids until I was 11 years old, and I started blood transfusions. I still receive 2 - 3 units of blood every 3 weeks. I became a Registered Nurse at the age of 22, and still work full time. I absolutely love to travel, and I have been to several countries internationally. I feel I live a very full life !

I dream to one day be a zoologist. I believe everyone should be kind to one another. I can achieve anything I put my mind to!

Ashlynn was born in 2008 and within hours went into congestive heart failure and respiratory distress. She received her first blood transfusion at 12 hours old!! She continued getting blood transfusions every 2-4 weeks and started her chelation medicine to help with excess iron! She had two steroid trials but unfortunately both failed! On August 31, 2016 she got a bone marrow transplant from a man in Germany! It was a rough road with many complications but now she is 6 years post transplant! She’s doing amazing now she plays travel softball and does amazing in that! She is now 14 and there are some complications from transplant but for the most part living a happy teenage life ❤️

Audrey was born a month early. She had a hole in her heart and was low on red blood cells. Audrey had a red blood cell transfusion and was discharged after a couple weeks. Unfortunately we ended up in the ER a couple months later because Audrey was very low on red blood cells. This started our journey in the world of DBA. Audrey has had several medical procedures since her birth and has had many transfusions. Audrey currently received a red blood cell transfusion every 4 weeks. A few years ago Audrey had several viral videos and has been able to let an extremely large amount of people know about Diamond Blackfan Anemia! She still has over a million followers on both Facebook (Audrey’s DBA Photobooth) and YouTube! She does not let DBA define her!

Avarielle’s struggle began while she was still in the womb. She fought many complications during my pregnancy. She entered the world 9 weeks early, weighing only 3 pounds. She spent 6 weeks in the NICU proving her strength and will to live. Doctors initially attributed her anemia to her prematurity. But soon realized she had a hematologic disorder when she was also found to be profoundly neutropenic as well. It took 3 years many labs and genetic testing to confirm Avarielle’s diagnosis of DBA. She has the RPL35a form. we have had two steroid trials that failed after 1-2 years. She is now transfusion dependent and receives blood every 4 weeks. Those early years were quite frightening and distressing. We have learned to incorporate DBA into our family. Avarielle is now 10 and is thriving!! She is an excellent student, loves to play soccer and is on the swim team. We are in awe of her strength, courage and resiliency. We are also so very grateful for the scientists and doctors who continue to tirelessly research DBA in hope for a cure! We also love the support of our DBA community!!

Hi my name is Brandy I’m 36 I’ve been battling DBA since I was an infant I am transfusion dependent I have iron overload due to all the transfusions which requires a MRI scan every year to see how much extra iron is on my organs, because of the extra iron on my organs I must take a iron chelation to take the excess iron off my organs. When I was younger I was steroid dependent until the medicine stopped working at age 18 due to the prolonged use of prednisone I have bone density scans every 2 years and have osteoporosis from the steroid use, It’s a roller Coaster but with God, My Husband, My Family, and My DBA Family support I battle this DBA one day at a time with confidence I am grateful for each day I’m blessed with as it is a gift. Thank You for your donations and support I pray one day there will be a cure for Diamond Black Fan Anemia

Our story is very abnormal. I (Brianna) had a bout of severe anemia after Delaney was born that doctors were never able to find the cause for. I was able to recover after a couple of weeks of transfusions. It wasn’t until Colter was born that we had suspected something genetic was at play when he was born with the same triphylangeal thumbs as me. He was also born with ptosis of his left eye, one kidney, a heart defect, and failure to thrive. Colter and myself were diagnosed early 2023 with DBA after getting genetic testing done at Mayo Clinic. We then decided to test Delaney as well because she used to have an arrhythmia that has since been surgically repaired. That is when we found out she also has DBA. Thankfully we are all in remission at this time without treatment, but we all know the scary truth is that can change at any moment. We are very hopeful that with continued research, things will look very different for those with DBA in the coming years!

My dream is to continue to do everything possible to find a cure for Diamond Blackfan Anemia. My gene mutation is RPS 26.

Brooke has rpl5 was transfusion dependent for the first eight years I also had a cleft palate and triphalangeal thumbs, many surgeries were had to repair these also suffer from eosophilic esopagitus age 8 had a bone marrow transplant that was extremely tough spending nearly a year in hospital, Brookethen went on to have sepsisresulting on being in icu on a ventilator for 71 days they said she wouldn’t walk talk again, well Brooke proves them all wrong she amazes us everyday with her strength and determination she is due to start college in September. She has lots of other health issues to deal with but we honestly couldn’t be more proud !!!!

Cassidy began treatment at 7 weeks old after she was found by her pediatrician to have a hemoglobin level of 3. We were sent to the pediatric hospital closest to us where she began her journey of being transfusion dependent. We were immediately connected with St. Jude, who has treated her ever since. Since then she has had to have transfusions every 3-4 weeks, more recently every 3. She has had 2 failed steroid trials, and is currently doing dual chelation therapy to manage the iron overload from so many transfusions. She is the first person on either side of the family to have the gene mutation. She has learned over time more and more how to advocate for herself when she can, and has been handling things like nightly sticks for chelation to taking oral meds on her own cue after years of us having to mix her meds. She takes more interest in her health all the time and is learning to ask good questions about her health and care. She has always been very spunky, energetic, and full of life despite her illness. At times this can be challenging in terms of helping her understand the seriousness of it; bur overall we as her family are grateful she feels as good as she does most days. She wants to be a vet some day, and has an ability to connect with lots of different animals.

Cate was diagnosed with DBA after being hospitalized with a hemoglobin count of 3.5. Cate is a fighter, and she has battled low red cells, low white cells, and low platelets. We can't be certain what the future holds for Cate, but we know that her tenacity will help her face any obstacle in her way. After countless genetic tests, we still don't have a genetic marker for DBA, but we are hopeful that our dedicated researchers will change that soon.

I was diagnosed with non- classical DBA at 25 years old, after giving birth to a transfusion dependent child, also diagnosed with DBA. I had always been anemic, but doctors never looked into the reasoning why. I am very grateful that I did not need to receive any treatment until 30 years old, i only recieved 3 blood transfusions and went into remission. I am now focused on staying healthy and staying on top of routine physicals/cancer screenings.

I am 51 years old and living a pretty normal life with Diamond Blackfan Anemia. I was diagnosed at 3 months of age in 1971 with a 2 point hemoglobin. From that time until the age of 12 years old I was treated with Prednisone. Around 12 years, the Prednisone dose needed to achieve acceptable results was getting way too high...I was switched to blood transfusions. I have been receiving two units of red cells every two/three weeks for the past 38 years. I have been thankful that my veins have held up for the most part and I have not had to get a port. I have been able to live a pretty normal life. I went to college, earned a Bachelor's Degree and Master's Degree and lived a normal college kid life...sorority, good grades, bad grades, major change...and thanking God that social media wasn't around. I work a full-time job as an Academic Advisor at Cleveland State University. I guess the roughest part of being transfusion dependent has been forming relationships. I am single, dated but seems like when it was time to 'share' I was dating a lot of ghosts. The biggest challenge now is navigating insurance and medical costs. I've reached the point of saying well hope the nieces and nephew aren't expecting an inheritance. I am also suspicious that I lost a job of 15 years due to my consumption of medical insurance. Strange during a large lay-off at my previous university I was the only Academic Advisor laid off??? In summary, I would say that I have a good life. I really don't let Diamond Blackfan Anemia affect me. It makes for good conversation.

Dawson was born with DBA, but we didn’t know. He was born a week early, and also with an extra thumb on his right hand. We didn’t think anything about it, and neither did the doctors. When we left the hospital, we had to go to the pediatricians office the very next day because he wasn’t gaining weight like he should. We went to the doctors office and he had started gaining weight, so they sent us home. The very next week I ended up at the pediatricians office with him again, because he was eating, but every time that he ate he would cry. They sent me home and told me that it was just a new mothers issue… I had a six year old at home so I was not a new mother. The next week we were at the pediatricians office again for the same issue… And they changed his formula and sent us home. This did not help, in fact, I think it made it worse. The next week, Dawson’s great grandmother came to see him, and noticed that he was extremely pale, and he was still crying every time he would take a bottle. We were able to get in to see the pediatrician, and he literally took one look at him, and asked the nurse to do a hemoglobin check and an oxygen count on him. He came back low on both…. In fact, his hemoglobin was 3.0, which is REALLY low. They sent us directly to the University of Kentucky Children’s Hospital and we were put in the PICU for three days. They did so many tests and he had to have two immediate blood transfusions when we were admitted. We got out of the PICU and had to stay in a regular room for two days and in that time were given the diagnosis of Diamond Blackfan Anemia. We went back and forth to Cincinnati Children’s Hospital for doctors appointments and tests. We found out that Dawson’s older brother, Dusty was a 100% match for a bone marrow transplant. In July of 2014, Dawson was admitted to Cincinnati Children’s for a complete bone marrow transplant. We lived in Cincinnati for 6 months + and were in isolation for a complete year. He did amazing and is currently doing great!!! We have to go to Cincinnati Children’s for a check up once a year, and we have been blessed every year with a good report. Dawson is a true miracle and we know that God is good!!!

Diagnosed at 3 months old, I traveled the road of steroid dependence. I grew up mostly unrestricted with parents who embraced my wild ideas as a child to be and do whatever my imagination could conjure up! I was a second baseman, a 4-H kid, a State Science Fair Superior Rated science junkie, and a drumline section leader. When I was a Freshman in high school, I had open heart surgery for a congenital defect. I returned to school just 4 weeks later to win the science fair with a project I completed while in the hospital recovering. I have had the honor of appearing on Fox 19 Cincinnati, NBC-4 Columbus, and presenting my heart surgeon with the Lifetime of Achievement Award at the Annual Cincinnati Ronald McDonald House Red Tie Gala. I attended undergrad at Ohio University in Athens Ohio. During my time at OU, I was auditioning for the Marching 110 when I began struggling with physical activity during band camp. By the end of my first quarter at OU, I had started my transition from steroids to blood transfusions. Since that time, I have had thousands of units of blood through everything from IVs to PICC Lines to my current Mediport. Refusing to give up, I try to maintain compliance with my iron chelation therapy. I have completed my Master's Degree as an Acute Care Nurse Practitioner and currently work full-time in an ICU in Southern Ohio. I am also completing my Doctorate of Nursing Practice Degree and a Master's in Business Administration from the University of Tennessee at Chattanooga. In my free time, I play drums for my church, serve as the Vice-Chairman for the Board of Directors at the American Red Cross of Central and Southern Ohio, and lead as an ambassador for both the EPIC Young Professionals organization with our local chamber of commerce, and The American Association of Critical Care Nurses. I am grateful to serve a God that has given me opportunity despite my illness, and I will strive as a Doctor of Nursing to provide answers to those who feel abandoned and without hope, lost in our medical systems.

I was diagnosed with DBA as a baby and was on steroids until the age of 11. I was in remission until the age of 13, when it came back and steroids did not work. After a year and a bit of medication trials and monthly blood transfusions, I opted for a stem cell transplant as 2/3 siblings were perfect matches. I had several struggles during the transplant and almost died due to GVHD and VOD, but two knee, one hip and 22 years later, I am in remission! No meds, nothing.

DBA does not define me. My strength, courage and joyful spirit does.

Elaina’s journey started when she was 2 months old. Seeming pale, her pediatrician checked her blood counts and found she was severely anemic. That night she received her first of a years worth of blood transfusions at Boston Children’s Hospital. Shortly after she was diagnosed with DBA. She also was born with a cleft palate that caused her feeding difficulties, requiring her to have a feeding tube. She had her cleft palate repaired at 10 months old and started steroid therapy for her anemia at 1 year old. She has been steroid dependent since and now eats well on her own! It hasn’t been easy, there’s been some bumps on the road though the years, but our girl is a true fighter. She lives a full life, filled with normal kid activities. She loves to dance and sing and her dream is work with animals some day!

My DBA doesn't define me, but my resilience does.

Ella was born 8 weeks early weighing only 2 pounds 9 ounces. She was born with Bilateral Clubbed Feet and a right leg that doesn’t bend. While in the NICU, she needed two blood transfusion, which the doctors thought was due to being so early. Once released from the NICU at almost 7 weeks old, Ella seemed to be doing great. However, within just a few weeks we noticed she had become increasingly fussy, not eating as well and super pale. We made her an appointment with her pediatrician who began running all sorts of labs. After seeing her hemoglobin counts, the doctor had their lab run the test over a couple times thinking there was a mistake. Ella’s hemoglobin came back at just 2.4. We were immediately rushed to our local children's hospital where she ended up having a couple more blood infusions within the next couple days. We were then referred to the amazing team of doctors at St Jude Children's Research Hospital, where she was finally diagnosed with Diamond Blackfan Anemia. After 2 failed steroid trials, Ella has continued receiving blood transfusions every 2-3 weeks as needed. And finally, thanks to Be the Match and one amazing donor, our sweet girl will receive her Bone Marrow Transplant August 2022!!

I Dream for the day that I make my own blood.

Hello, this is my beautiful first born named Greyson. His gene is not found yet, and we are currently taking part in the steroid trial. Being a new mother to a child with this rare medical condition and been one of the hardest things I have faced in my life. But yet, it is one of the most fulfilling and such a blessing as watching him conquer the difficult things that others don’t have to experience with a beautiful smile on his face. He is such a happy boy and so resilient. He is my hero and I can not wait for him to inspire others as much as he does me everyday day as he grows up. ❤️

Our sweet girl was diagnosed with DBA when she was merely 5 months old. As confusing and scary as it was, we quickly realized that she is stronger than we could ever imagine being. She has been dependent on transfusions but we are about to begin a trial steroid therapy. Whatever the outcome, all that matters is the smile on her face. And it grows bigger and bigger everyday.

Haven is a beautiful 5 year old warrior princess who needs regular blood transfusions every 3 weeks. A week after Haven's first birthday, we woke to find her unable to walk or stand. She couldn't move her hands either. We rushed her to the Childrens Hospital who immediately took bloods and put her into PICU. Once the bloods came back, the doctors pulled me aside and told me that they didn't know how Haven was alive as her Haemgoblin was only 20. We had so many doctors in our room trying to figure out what was going on. She got a emergency blood transfusion and was sent in for a MRI to find out why Haven was paralysed. I was called into a meeting 5 hours later, where they informed me that Haven had a severe stroke due to to oxygen not being able to travel to her brain which was a result of critical levels of Haemgoblin. Four big areas of Haven's brain had been damaged. Fast forward 4 years and Haven has been diagnosed with Cerebral Palsy due to her stroke and requires aides to help her walk as she fatigues quite quickly. She also has Diamond Blackfan Anemia RPS19 and is needing blood transfusions every 3 weeks. She just had transfusion 64! We are on the hunt for a perfect match for a bone marrow transplant in the future. Haven is a precious girl who is incredibly happy, obsessed with Barbies, unicorns and mermaids. and loves being around her family.

I was diagnosed at 12 weeks of age. I’m currently transfusion dependent. My dream would be to be a professional soccer player one day if not then I’d like to pursue a career in sports.

Jackson had extremely low levels of hemoglobin, neutrophils, and platelets at birth. He was diagnosed with DBA syndrome six weeks later through genetic testing, which confirmed a mutation in RPS19. Due to his persistent neutropenia with frequent illnesses and anemia, Jackson underwent a stem cell transplant at 10 months of age using unrelated cord blood. Although his bone marrow failure is in remission from the transplant, he still endures challenges from the complications he faced during the transplant. Jackson is a strong little boy who is enjoying life outside of the hospital now. He goes to school, enjoys the beach, and loves to play outside.

I was delivered by c-section because Mom had felt no movement in 24 hours and was failing the tests administered by her doctors. I was greyish in color and not responsive. When the delivery room nurses were finally able to get me to breathe, I was rushed to the NICU. I crashed a couple more times that day. My parents were told I might not make it. My hemoglobin was 4, I had pulmonary hypertension and cardiomegaly. I was immediately given a blood transfusion. I remained in the NICU for 2 months. During this time several other problems arose, but I conquered them all. The support of the hospital staff, my family, our church family and friends who were all praying for me brought me through. One issue I still deal with is the fact that I do not produce white cells or red. Therefore; I have to take shots every couple of days to stay well. Until I was old enough to get neupogen shots to boost my white cells, I was sick in the hospital frequently. I tried steroid treatments twice to boost the red cells, but it failed to work for me. I do not have a bone marrow match so a transplant has not been the answer for me. To date I have had 169 blood transfusions, I am in school, play basketball and softball, am a cub scout and involved in church activities. Our Motto has always been "Believing in Miracles". I think it's safe to say that I am one.

When I was 3 months old I got very sick. My parents were all alone in Nashville, TN, with no family around. They took me to a hospital, there they run numerous tests on me and finally diagnosed me leukemia. Of course this devastated my parents. They took me home,took me to church,told all the family,and everyone prayed. They took me back for more tests and found out I was severely anemic. Dr told them I had Diamond Blackfan Anemia. All the Dr's at Vanderbilt hospital said I was a miracle baby. They took good care of me and my parents, and I've been able to live a healthy life.

Jeremy was flagged on the newborn screen for SCID (severe combined immunodeficiency... the "boy in the bubble" disease). At 7 weeks old, his now routine immunology bloodwork showed severe anemia. After 15 transfusions, he started on prednisone at age 2. After a year of no transfusions, his response to the prednisone started to flag. At 3, he finally got a bone marrow match, an unrelated man in German. On Valentines Day 2020, he had his bone marrow transplant. It was a difficult transplant and it took Jeremy over a year to fully recover from the resulting complications. However, at 6, he is now out and living his best life! You would never known to see him that his first few years were so rocky.

Every DBA family navigates through their own unique medical journey. At three months old, my daughter Katie was diagnosed with Diamond Blackfan anemia and at that moment we started to research all of our options. I’m sure everyone can agree, it is an overwhelming process. Ultimately, my wife, Stacy and I decided to use PGT-M to find Katie’s HLA match and have another baby. At three years old Katie had ovarian cryopreservation followed by a successful bone marrow transplant performed at Memorial Sloan Kettering. Some folks may be familiar with our story as we were featured on The View with Barbara Walters and Whoopi Goldberg, and on 20/20 with Elizabeth Vargas. I chronicled every step of our journey in a book called Saving Katie where I share every detail in hopes that others may not go in as blindly as we had. (Proceeds from the sale will help support the DBA Foundation and the Bone Marrow & Cancer Foundation.)

Kendra was diagnosed with DBA at 5 months old. She was born 6 wks early with a hgb of 7 and suffered cardiac arrest and a stroke at birth. Kendra was also diagnosed as brain dead 11 hrs after birth. 28 hrs after birth Kendra raised her hand and stretched. From that moment on Kendra has taught me more about life than I ever could have imagined. Kendra has taught me about strength and happiness. Kendra has missed many milestones yet she found a way for her nonverbal voice to be heard, she found a way laugh and play like any other child, but differently. Kendra Loves basketball, Barney and Curious George. Kendra also Loves to watch her daddy work on the tractor and scare her brother.

Kinsley was diagnosed with DBA at 10 months old. She was transfusion dependent for 1.5 years until we tried the steproid trial. She then went into remission which lasted 2 years!! She has been out of remission for almost 3 years and is on steroid therapy. Despite having a chronic illness, Kinsley thrives in school and enjoys sports such as soccer, basketball, and baseball.

Liam was hospitalized at 2 months old with low hemoglobin, and diagnosed with Diamond Blackfan Anemia through genetic testing at 4 months old. He has been steroid dependent for over 9 years. We have described our journey in detail on our website, for anyone interested. Liam is a happy, creative, and active 10 year old who lives a very “typical” life. We are so fortunate to have the DBA Foundation in our lives, educating us and our doctors and allowing Liam to live life to its fullest!

I have been strong my entire life, never looking back always having a goal in mind to look forward to. Right now I’m in cosmetology school and loving it. I have hosted many blood drives to help me and others. I have 2 dogs that have helped me through the bad days, in my younger days I would get blood transfusion for two years then switch to steroids, now days I just take low dose steroids every day. I’m living my best life going to school and working.

Llewyn was born with a TEF and needed to go under emergency surgery on his esophagus day 2 of life. During the surgery process they discovered he was also severely anemic and needed a blood transfusion. This quickly became the norm and after several tests were ruled out we were sat down and talked to about it the possibility of him having DBA. Our doctor shared that it was very rare and sometimes could be hard to detect. After a long few weeks of waiting, we received the call confirming Llewyn has tested positive for “RPS26” associated Diamond Blackfan Anemia. My husband and I also tested and it was confirmed that we were not carriers, so Lleywn was the first in our family. Shortly after receiving this news, we reached out to Dawn from the DBA Foundation and she took us under her wings and became our guardian angel. Due to the rarity of this blood disorder there isn’t a lot of guidance or groups that can truly relate. We are for very grateful for Dawn + the DBA Foundation that have walked alongside of us to give us Hope + Strength. Llewyn went through steroid treatment for about a year and then his body quit responding so he is currently receiving monthly blood transfusions at Phoenix Childrens Hospital. Special shout-out to another earth angel, Twila, for helping us find our Medical Team at PCH as well as finding us our dream home during a very hard season of life. DBA can feel very isolating and lonely due to its rarity but we encourage all of the other families to not give up hope and find your village. They are out there and you’ll need them in ways that are indescribable. Lean into love…..we are all in this together! Llewyn’s name stands for: lion + leader As a family we will keep roaring + fighting for all of the DBA warriors!

Hi! I'm Carole and this is my dad Marty. We both have DBA, however, our stories and journey's are vastly different! I was diagnosed with Diamond Blackfan Anemia on my 1st birthday with a hemoglobin of 2.2. After an initial blood transfusion, I started my journey with steroids. I had to start supplementing my care plan with blood transfusions around the age of 12 and that lasted until I was 20. Through all of this, I was still able to dance, play sports, and enjoy my childhood. Eventually, I made the decision to switch to being fully transfusion dependent, and every three weeks, I get to go visit my favorite nurses! It's what I've done through college, grad school, and will continue to do as I start a career. My dad, on the other hand, went undiagnosed for 68 years. He grew up struggling with mild anemia and even played football through high school and college with a hemoglobin in the 8's at times. At 68, his hemoglobin dropped which triggered lots of testing and an official diagnosis of DBA. He went through over a year of being transfused every four weeks. These days, he enjoys golfing, spending time with family, and can be found getting the occasional blood transfusion to manage his symptoms. Through all that Diamond Blackfan Anemia presents, the community that we have found has meant so much to us. As Lou Gehrig once said "I might have had a tough break, but I have an awful lot to live for," and as hard as DBA can be sometimes, our family and this community is who we live for.

My name is McKenzie and I inherited DBA from my father. I was diagnosed at 5 weeks old when I needed my first blood transfusion. When I was one, I was started in steroid therapy but did not respond and still required regular transfusions. At that point, it was decided that a bone marrow transplant would be the best option for my health in the long run. Luckily, my mom and dad were blessed with another baby girl, my sister Carlee. After lots of tests and waiting, we learned that Carlee not only did not inherit the DBA gene, she was also a 100% genetic match for my transplant. While we waited on Carlee to get big enough to harvest bone marrow, I started a chelation treatment to help my body get rid of the extra iron that had started to build up with the years of blood transfusions. When I was four, we traveled to Cincinnati Children’s Hospital to have my transplant. I was only on treatment for about 6 months and after 10 months completely released from all medical restriction. I am now 13 and just celebrated my 9th anniversary. Although I no longer suffer the symptoms and medical needs from DBA, I will forever be a part of the DBA family. It is still in my genes. My father still fights the daily battle of medicine and blood transfusions. We are a proud DBA family.

McKindree is seven years post bone marrow transplant! Her greatest joy has been marrying the love of her life! She is navigating ongoing health issues, but is grateful for each new day! Her journey has been difficult, but the compassion and empathy she has for others is immense.

I was diagnosed with Diamond Blackfan Anemia at six weeks old. From there, I was transfusion dependent for many years, getting blood every 4 to 6 weeks. At age 22, my hematologist suggested I consider a bone marrow transplant due to some cellular changes in my bone marrow and some transfusion-related complications. Since none of my siblings were a match, a hero donor from Germany gave me a "new birthday" and my transplant was in December 2021. I am currently rebuilding my health from the transplant process and hoping to remain transfusion-free

I was born in the Autumn of '85 with Spina Bifida and Hydrocephalus, to my parents, in New Zealand. I am the middle child of 3. When I was a newborn, my parents were told that I would not live more than 2 days to 2 weeks, so I was not given any medical treatment, and was only kept comfortable until my supposed "day of death". The two-week mark came and went, and the doctors approached my parents and told them that by law, now I've survived my "life expectancy", they have to begin all my medical treatment. I was in and out of the hospital for the first few years of my life, repairing my Spina Bifida lesion, then having a VP shunt inserted into my brain to drain the excess CSF into my abdomen. I even had a full blood transfusion as a baby. Life was pretty normal growing up, went to normal school. Did normal things. Did an awful lot of sports including wheelchair racing, swimming, and equine therapy. I even competed in multiple sports. One thing that always perplexed my parents was my deformed thumb. Nobody knew why I had it. I was just told it was because I sucked my thumb too much lol. Fast forward a little bit and I move to Brisbane, Australia. I went through my school years doing alright, and I'm now a 25yo adult. It'd been a few years since I rode a horse due to various reasons. I wanted to ride again so bad, but my primary care/general prac doctor didn't feel comfortable signing forms to let me ride unless I went for a checkup. So I went, I had a blood test done, and figured all was fine. Went home. Then got a panicked emergency call and was told I needed to go to the hospital immediately. I was severely anemic. I had no idea why. It took 3-4 years of testing, various pills, needles, iron infusions, and experimental treatments and nothing could be found. I was then transferred to a specialist in the hospital who again couldn't find an answer. However, I had been told I needed to start blood transfusions straight away. The first few years I was able to have them relatively irregularly... maybe every 6 weeks, sometimes up to 5 months I went without one! It wasn't until maybe 3 years in that a young switched on doctor realised that I might have a condition called Diamond-Blackfan Anemia (DBA), and she went on to say that many are born with thumb or hand deformities. I had a HUGE "AHA!" moment and smiled hugely at her, and showed her my thumb. She was SO excited to know that what she thought was correct! I began chelation treatment. First, it was ExJade. I am HORRENDOUS at taking meds due to my Executive Dysfunction (from the Hydrocephalus).... and I haaated the texture of ExJade. It was years of battles for me to remember to take those meds. Doctors would try to scare me and tell me if I didn't take them I'd get iron overload and go into organ failure and die. It still didn't "make me remember" to take my pills. It wasn't until I started crushing the ExJade in honey that I was able to remember to take them faithfully because I could then tolerate it. THEN I got the news I was able to switch to Jadenu, which wasn't a pill you had to dissolve or crush. I could swallow it like a normal pill, and I began to remember taking it religiously by always keeping them on the kitchen bench where I make my morning coffee. It WORKED! Unfortunately, I was doing so well taking them, that I inadvertently had side effects from the Jadenu. It caused my kidneys to drop to 10% although I also had a severe pressure wound in my heel, cellulitis, AND chronic lymphodema in both legs at the same time. The lymphodema was likely caused by the excess fluid from the blood transfusions and fluid they give you before and after treatment. I almost died. It was horrific. However, now it's two years on from that traumatic time. I've managed to lose more than 20kg of fluid weight, I no longer have cellulitis and no longer have a pressure wound in my heel. I am having monthly blood transfusions, and have been back on Jadenu for a year, though taking a much lower dose. My iron levels are great and continue going down, my kidneys are fantastic... especially for someone who also has Spina Bifida - it is kidney failure that eventually gets us, and most of us generally only have kidneys that function about 50% as it is, but mine are at 100% and life is honestly great. I am even back doing what I love, working with horses. Life is normal now and everything is in check. It is entirely possible to live a full and happy life with DBA, provided one looks after themselves really well and has all the support they need!

We are thriving thanks to blood donors!

Living with DBA is a challenge and an education. We're so grateful for the medical expertise and community support that helps Naomi to grow, thrive, and adventure! She's playful, serene, loves to dance, sing, and tell stories, and brings joy to everyone she meets.

On Noah's first birthday, through a blood test Noah was found to be anemic and eventually was diagnosed with DBA with the RPS19 mutation. At the time this was so overwhelming, but with the support of many including the DBA foundation, and other beautiful families we were lucky enough to meet both online and at camp sunshine we feel so much more informed and prepared for whatever the future holds for our little man. He has been steroid dependent for 6 ears now and is on a very low dose every other day! He is thriving and living his absolute best life, although not quite understanding his condition yet - he tells everyone he has "special blood"! DBA kids/adults are so special, and so resilient and our boy has taught us so many lessons in this life.

Hi everyone. I’m Pascal Cheung, a DBA patient from the Boston area. Specifically, I grew up in Lexington, the town where the American Revolution started. Despite my namesake, I cannot speak French or Chinese (Cantonese specifically) at all. At birth, I had a host of medical problems resulting in the need for a trachea tube and feeding tubes. I was not diagnosed with DBA until the age of 4. It was later discovered that I have the RPL5 mutation. I currently live in the Toronto area, majoring in environmental biology at the University of Toronto. As an aspiring environmental biologist living with DBA, I appreciate all aspects of biology. I take prednisone (a corticosteroid) to treat my DBA. This has caused stunted growth, brittle bones, and bloat. While I felt alienated as a kid since my peers didn’t have to go through what I had to, I still made friends who understand my situation. I also took piano and karate classes (the latter to hinder the effects of brittle bones). There’s no amount of gratitude that can express how grateful I am to have such great doctors and friends. To everyone I’ve met, I am eternally indebted to all of you for making me the person I am today.

When Peyton was born in 2006, she was very sick and her parents didn’t know why as her mom’s pregnancy went as planned. After being in the NICU for 17 days, Peyton was able to come home. Eight weeks later, we found ourselves in the ER with a baby that was barely clinging to life and had a hemoglobin of 1.2. Another 2 week stay and many blood transfusions later, we received the official diagnosis of DBA. Our whole lives changed that day. We had no idea what to do, what was in our future or how we were going to cope as a family with a child that had a rare illness that we had never heard of. So many questions and concerns as we started to navigate this new way of life but off we went down this road. We had 12 years of ups and downs, too many hospital stays to count, port placement, port replacement, liver and bone marrow biopsies, MRI’s, night after night on desferal pumps and struggles drinking Exjade, and every three weeks of having blood transfusions. Over 200. 4 years ago, Peyton spontaneously went into remission. We were so happy and couldn’t believe it. For so long we have been wondering what it would be like to lead a life without being in the hospital all the time. Peyton’s doctors and nurses are some of the best people on the planet. They are the reason she’s here today and thriving. Peyton is now 16 years old, about to start her junior year of high school. While she is free of transfusions, she still lives with DBA every single day and always will. The future is bright though and we look forward to seeing what Peyton will do. Because of all her time spent in the hospital, she has decided she would like to go to college to become a pediatric nurse. Peyton understands the struggle of being a child with a chronic illness and she can relate to others going through it. Although this is a life we would have never chosen for our child, we have met some amazing families along the way and had some unforgettable moments. We are blessed to be apart of such a unique family!

Poppy was born 23/05/2019 in Cairns Australia. At 6 weeks I noticed her color wasn't normal so we got a blood test done and her HG was 27. So we rushed to Hospital and she was fainting and hooked up her all these machines. It was a very surreal and scary moment as I didn't know what was happening and there were about 10 nurses and doctors surrounding my daughter. She had her first blood transfusion at 6 weeks and a few more a few days and weeks later, as they were hoping by transfusing her it would kick off the red blood cell cycle, but each time we got results it went down. We got into a pattern of 3-4 weeks blood test and then 3-4 week blood transfusions. At 6 months she went to Brisbane, Australia for bone biopsy. At 9 months she was diagnosed with Diamond Black fan. When she was diagnosed it was a slight relief of finally knowing(I googled even more now) I found the Fb page and called a few aussie families and my mum even called Dawn in USA. We had so many questions. At 12 months she failed a steroid trial. At 18 months she got a Port in Townsville, Australia. At 2 and half years ago she failed her second steroid trial. At 3 years we had a discussion with a Transplant physician in Perth, Western Australia. She is on the waiting for a donor. We are still unsure of what the future holds, we obviously want the best quality of life for our Poppysauce.

My DBA story is not the "standard" DBA story. I was not diagnosed until I was almost 3 years old, and I was incredibly lucky where I went into a spontaneous remission after a few emergency blood transfusions. I've been in remission since (33 plus years!) I did experience a "pregnancy-induced relapse" and required several blood transfusions during my pregnancy, but luckily have stayed out of remission since. I am married with a 2-year old daughter - who we had thru PGD IVF to ensure any future children would not have DBA - and our basset hound Belle. We live on the Jersey Shore, we love Disney, spending time with family and friends, and living a normal life. I am an open book when it comes to DBA and PGD IVF, and am happy to share my experiences with anyone who is interested in learning more. I'm an Environmental Scientist, and travel often for work. I am also passionate about yoga, and am learning ways to adapt to traditional yoga poses with me bone deformities due to DBA - stay tuned. Volunteering is important to me, and I love giving back as much as I can!

Sam was diagnosed with DBA at 6 months old in the process of testing for hearing loss that was determined at a week old. He was born “in remission which lasted for approximately a year and a half. He experienced remission a second that lasted for five years. Sam has bilateral conductive hearing loss for which he has worn hearing aids since he was 8 months old.We discovered he had a submucosal cleft palates which he had repaired. Sam has slight anomalies with his thumbs as . That all being said, Sam met or exceeded all benchmarks as a baby and toddler. He was in the gifted and talented program all through elementary school. He has been on honor roll since beginning high school and has excelled in AP classes as well. Although he receives blood transfusions every five weeks and chelates daily with Jadenu, Sam is a very typical teenaged boy. He has a brother who is two years older than him and an adorable rescue dog named Mustard.

I was a very sick baby and for months my parents or the physicians didn't know what was wrong with me. My parents were told that I could possibly have Leukemia and that I only had a few months to live. It wasn't until I was 18 months old that my parents got an answer about my health. I was diagnosed with Diamond Blackfan Anemia. At that time I had my first and only blood transfusion. My parents were then told that there was a slim chance I wouldn't make it into my early 20s. Since then I have taken steroids. I was on a much heavier dose of steroids when I was younger which stunted my growth. However, I still take steroids but at a very small dose taken twice a week. I go on regular doctor visits about twice a year with blood tests drawn several times throughout. Aside from DBA, I am a graphic designer for a beverage distributor. In my free time you will find me perfecting my fine art skills in drawing and painting. My work is a majority of self portraits that give the viewer a closer look into who I am as an individual. Creating new pieces is my escape from reality, my safe space. It is where I feel the most powerful. Music has helped inspire my work and move it into directions I never thought. Music as also made me aware that I have a very passionate love for collecting vinyl records. I am very blessed and grateful to be healthy and be able to live, for the most part, a normal life with DBA. I want every DBA patient to have the life I was given which is why I have put efforts into my parents, Carol and Jim Mancuso's "Friends of DBA" foundation. I recently become an active foundation board member with the responsibility as the web and print designer. I reworked the foundation website giving it a fresh and modern look. The goal of the foundation is to help support families in financial need as well as finding a cure for this disease. Without DBA, I would not have met so many wonderful people who understand what this disease is and what it's like to live with it. DBA has made me the person I am today and for that I am very grateful and would not change it for the world. For more information on "Friends of DBA" visit: http://www.friendsofdba.info

We discovered that Willow Marie had DBA at a 4 month old check up appointment where I had asked her pediatrician to do a blood lab because my mother was pressing me about how pale Willow Marie looked. Her hemoglobin came back at 3.2 and we were rushed to Seattle Childrens hospital where she had her first 7 transfusions done. Since then, Willow has had 24 transfusions, a bone marrow biopsy to confirm her genetic mutation (rpl5), several MRIs, a year on a steroid trial, and now is on chronic blood transfusions every 4 to 6 weeks. Willow Marie also was born with profound hearing loss, and was implanted with a cochlear implant in her left ear at 18 months old. She has come a long ways since her 4 month old check up, and is wild and crazy as ever!