The Battle with Hereditary Spherocytosis
As some of you know, my youngest son Ryan is in a constant battle with his body. He gained a blood disorder through family genes called Hereditary spherocytosis. This disease causes a percentage of his red blood cells to be odd shaped but still healthy, in turn, his spleen detects them as being a foreign object and destroys them. This is obviously bad...
Now, in most humans, this disorder or disease only affects a tiny percentage of the bodies red blood cells. In Ryan's case, it's close to 1/2 his red blood cells. Overall this causes his spleen to destroy his red blood cells which cause his hemoglobin counts to spiral down and puts his body in jeopardy of suffocating itself which becomes noticeable as his body gets very jaudice. My bride and I have to keep a close eye on his blood levels so that they do not dip below a 5 and cause un-repairable brain damage. Normal Hemoglobin counts are in the 14 range. Ryan always hovers in the 9-11 range and can drop to 7-6 within a 24 hr period or less if he gets sick.
So what does that mean for Ryan?
My wife has this same blood disorder, and she was also considered to have it bad, but her visits to the hospital were 3-5 months apart. Ryan's body has been going in at 4-6 weeks intervals. Which means a crap ton more blood tests, overall visits and doctor bills that are adding up.
Ryan on 11/14 full body blood exchange complete
How do they fix it?
Until he is nine years old, he needs blood transfusions and blood exchanges to keep fresh blood that his spleen will not destroy so his body can act as our body. Without this new blood via transfusions, his spleen gets overworked, and his red blood cell counts drop, and his hemoglobin levels drop, and his body suffocates in its waste it can't remove. Once he is nine, they can remove the spleen and stop the issue altogether. But the body needs the spleen for many reasons, and doctors like to try to leave it in the body as long as possible.
Do you have Insurance to pay for this?
While I have fantastic insurance through my job, since the Affordable Care Act was put into place, this blood disorder went from a 100% coverage item to a 90% coverage with costs now being 3x more than they were. My son now has to visit doctors in the cancer wards as this blood disorder has been reclassified. That all being said, the 10% we end up having to pay has been adding up.
First time LethalMama was able to hold Ryan since birth 11/15
How can you help?
Donate blood! That is the biggest thing you can do for my son and many others now suffering from this disorder. My bride is unable to donate along with her family as they all have the disorder. I can donate, but all blood has to be screened and we simply never know when he needs it. But my son is 0+ which is great as he can take any healthy blood available. The downside is with some blood types he brakes out in hives and causes the stay in the hospital to be extended.
Picture of Ryan 1/20/17:
I thank you for taking the time to read this and also if you have purchased a decal, myself and my family thank you.
~Mathew 'Lethal Camaro' Everett