What if your child would need blood transfusions every three weeks unless someone stepped in to help? What would you do to help?
Today I am sharing a special story- a true story- and I'm asking you not just to read it but to feel it.
If you can feel it, together we might just be able to save Hallie's life.
Imagine this. No- feel this.
Your baby girl was born 3 weeks early at 5 pounds. At 3 months old she was still only 8 pounds. You always thought something was wrong but you were told “You're a first time mom,” and “You're petite so it makes sense that she is too.”
At 19 days old she stopped breathing and turned blue! You thought she was resting but the dog knew something was wrong and protectively barked to alert you. They thought it was SIDS, then maybe reflux. Life went on. She survived but if only anyone had thought to test her blood that day.
For her first year she gained weight sooo slowly and took a month to recover from what seemed like a common cold.
At 13 months old, a doctor finally noticed that something was off. Anemia maybe? Blood test after blood test. “Well it's not Leukemia, so that's good.” More blood tests.
Finally you get a call.
“You need to get her to the Children's Hospital now. A team of hematologists will be waiting for you. Don't let her fall asleep in the car.” She needed an emergency blood transfusion.
This is the story of how Hallie's family learned that she has Diamond Blackfan Anemia. Her bone marrow is failing to produce red blood cells.