From the blog: Uppity Rib
Open letter to the person who saved my nephew’s life:
I don’t know who you are, what you look like, or where you live. I don’t know if you are a he or a she. I don’t even know whether you are still alive today.
But the kid in this photo is very much alive, and that’s because of you.
Ten years ago, when he was three months old, my nephew Ray was diagnosed with Severe Combined Immunodeficiency (SCID), a genetic disease that affects 1 in every 100,000 live births. If untreated, most babies with SCID usually die from infection before their first birthday.*
At four months, Ray got his first infection. His body was covered head to toe in thrush that wouldn’t go away; with his skin flaking off everywhere, he looked like a burn victim. He was tiny, not growing – “failing to thrive,” as they say in the medical field.
He cried a lot, and so did we, watching helplessly as the disease began to sap his life away.
The only treatment for Ray’s SCID was a bone marrow transplant, and for it to work, we had to find a donor with the same marrow type as Ray. Marrow matches are most commonly found in members of the patient’s family, but none of us could help.
Thus we were forced to rely on the kindness of strangers for the life-saving marrow. Unfortunately, the chronic shortage of registered donors made finding a match difficult. Ray was already half into his life expectancy; we were racing against time.
Then we got the news we’d been praying to hear. Because you took a moment to register as an organ donor, our little boy survived.
Ray’s body accepted your marrow, recovered from SCID and hit the ground running. He’s our radiant Miracle Child.
Ray is smart, generous and kind. He likes school, Warner Brothers cartoons, Disney movies, and Harry Potter – that fellow “Boy Who Lived,” saved by love.
We in Ray’s family will probably never get to thank you in person, so we post this letter in hopes that it inspires Rib Readers to register as organ donors in your honor.
We hope your story convinces them of how much they have to give, and how five minutes of their time at OrganDonor.gov could mean a lifetime for someone like Ray.
Uppity & Family
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