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.
Diamond Blackfan Anemia
Here is a quick numerical representation of what happened that day. Normal people have a hemoglobin level of 11-15. When you get sick it goes down a bit. When it gets as low as 7 you need a blood transfusion because your blood is not carrying enough oxygen through your body, so your organs will begin to fail.
When Hallie got to the hospital, her hemoglobin level was a 4. This bubbly, playful baby was enduring life threatening health complications and smiling in the face of it.
Hallie: Age 2. You'd never even guess that she ever needed a blood transfusion!
You would not know Hallie is sick by looking at her. You would not know that her family moved across the country to live near a specialist to be sure she was receiving the best care possible.
You would not know that she (and less than 800 other kids) has this extremely rare bone marrow failure if you saw her on the playground.
Hallie: Age 4. Enduring a life threatening blood disorder with a smile on her face.
She seems like a normal kid- and in many ways she is! She is now 6 years old, attending school and she is a Girl Scout. She sings and plays the piano…but if she gets sick, her immunity is compromised and her family heads to the hospital yet again.
It would not be obvious that she is on strong steroids and if her body becomes steroid resistant, which is a common outcome, you might now know that she will need blood transfusions every three weeks to survive.
But now you've lived a tiny part of her story in your heart. And now you can help.Â
Hallie's mom Elyse said to me that so often when people see a sick child they look away. Please don't look away today. You can be the one to make a difference in her life! Let's spread the word together!Â
To save Hallie's life, she either needs researchers to find a cure or lifelong treatment options or to find a bone marrow match for a bone marrow transplant. Neither of her parents are a match and her siblings are a match to each other but not Hallie.
Maybe you are the match. Or maybe it is your donation that will provide the needed research. What could you do to save her life?
Hallie: Age 6. Would you even know she was sick? What if you are the one who could save her life?
First, head to the DBA Foundation Website to learn more about this rare blood disorder.
Next head over to BeTheMatch.org to learn how to join the bone marrow registry. What if YOU are her match?!
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What an amazing story! Thanks for sharing.