For many, a world without bleeding disorders is simply a dream. Thousands of kids and adults affected face internal bleeding, costly treatments and lifelong infusions.
Normally kids have heroes who are adults, but that's not the case here. I'm a 32 year old man and my hero is an 8 year old boy named Ryan Andrew Crumley.
Ryan Andrew has moderate hemophilia A. Hemophilia is a bleeding disorder where the blood does clot properly. His first bleed was at 8 months old. He could not a even crawl because the bleed was in his hip. Since then he has had so many bleeds that he is beginning to have issues with his knees and elbows. Due to this he must receive ongoing treatments twice weekly, more if he has an injury or accident.
Don't be mistaken though, despite facing the hardships of this lifelong condition, Ryan has not let it bring him down even remotely. He has a joy for life that is unmatched. I've known him for over a year now and I've rarely seen him without a smile on his face. Even when he is getting an infusion, which means a needle stick to the arm, that smile isn't far away. In his 8 years, he has had so many visits to doctors offices and ER's, that it's impossible to put a number on it. But everytime he has to go, he handles it better than most adults I know.
This disorder isn't all bad though. Due to having hemophilia and through being a member of the Central California Hemophilia Foundation, Ryan has met people who have become lifelong friends. Everytime we go to a CCHF event, he gets to see all of his now extended family. That smile I mentioned earlier, when he gets to see his friends and family at those events, lights up the room.
I am asking all of you to join our walk team. I am also asking you to make a donation to our team. Anything that you can afford, would be greatly appreciated. All of your donations will go towards helping to get medication to families that can't afford it, educating families on the disorder, sending children to Hemophilia Camp, where they learn more about this disorder, and towards funding research to find a cure.
This disorder hasn't stopped Ryan Andrew from attacking life head on. I'm asking all of you to be like him, and help us to attack this head on as well.
I hope to see you all at the walk on September 22, 2019.
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. "Coming together is a beginning. Keeping together is progress. Working together is success."