July 3, 2013
Houlton, Maine
Contact and Information:
https://www.facebook.com/MiracleMileRace4Research
Some days are good, others not so good. Please help find a cure for our family.
Future ribosomal protein researcher…he just doesn’t know it yet.
Having twin boys with DBA makes you appreciate everything in life more on a daily basis.
Living with DBA has had its ups and downs, but with all the love and support we have gotten from our family and friends, we have been able to provide our daughter with the best life possible.
We are not the first to say this and we will not be the last, the DBAF has saved our child’s life. I cringe at the thought of what her care would be had we not met the DBAF.
One comment
My son Reuben now age 12yrs, went on a supplement programme from the age of three, following a number of unsuccessful drug trials. He was on a number of supplements, but one of the main ones was a custom amino acid contai ing a high dose of Luceine. My son showed signs of improvements after 12 months and was in remission by 18 months. There was another child in the Chezch Republic also responded to Leucine around the same time. My son has not required transfusions for 6 years now and is no longer on supplements.
Comment by Michelle Grainger-Mead on June 12, 2013 at 9:49 pm
By submitting a comment you grant Diamond Blackfan Anemia Foundation, Inc. a perpetual license to reproduce your words and name/web site in attribution. Inappropriate and irrelevant comments will be removed at an admin’s discretion. Your email is used for verification purposes only, it will never be shared.