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Having DBA has taught me to not give up the fight and to do the best that I can. The DBAF has become more than just a source of friends and knowledge, but a family of support through the bad and the good.
I am here. I am in the present tense. I’m not always here, and sometimes here is a very difficult place. Sometimes it is a labyrinth, or a Minotaur, or a rope I can neither let go of nor follow. It’s hard to find the right words, but I guess I would say that it’s something like feeling the floor. And that it is my privilege to feel it. -Meg Howrey
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.
With out the DBAF I would not be connected to others that have Diamond Blackfan Anemia. The DBAF has saved my life by educating me on what I need to do to combat this rare illness.
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.
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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.