Funded To: Professor Gil Tchernia Project Title: Evaluation of metoclopramide efficacy and toxicity in Diamond-Blackfan Anemia patients.
Funded To: Dr. Niklas Dahl Project Title: Funded Identification of the molecular basis of Diamond-Blackfan Anemia and evaluation of RPS 19 gene transfer.
We are hopeful that a cure will be discovered soon so that our son doesn’t have to endure pokes and disruptions and can feel good all the time – isn’t that what every child deserves?
Thankfully, our sweet girl functions very well with a low blood count. We couldn’t feel more blessed. There is hope!
Thank you DBAF for being there for us as we continue on this journey.
It has been seven years since DBA became part of our vocabulary. Our son’s diagnosis brought confusion, apprehension and despair. The discovery of DBAF is a stroke of serendipity. While even more tears were shed, these are now mingled with knowledge, understanding and, more significantly, hope. It will be through research that our son will be able to secure a brighter future.
DBA is a part of who I am… it does not define me nor will it stand in the way of my hopes and dreams.
As parents it is difficult to watch our son go through so much (IVs, pokes, transfusions, ER visits, steriod side effects, tests, ect.), but the resilience and toughness Elton shows each day is what gets us through.
Sometimes I feel like the odd one out, restricted by DBA. I just have to keep reminding myself that God wouldn’t bless me with this challenge if He didn’t think I could handle it. I don’t let DBA define me, I try to defy DBA.
Having twin boys with DBA makes you appreciate everything in life more on a daily basis.
“In His hand is the life of every creature and the breath of all mankind.” ~ Job 12:10
