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Sunday, April 15, 2018

Angels Among Us: Steven Riedle and His Gift to China

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Chinese boy with hemophilia before his accident

Tuesday is World Hemophilia Day, and we celebrate by sharing stories from patients in developing countries, and the angels among us who help them. Here is another story by Steven Riedle, who has been helping children with hemophilia in China quietly for years. Thank you, Steve!

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My brother Jack got the call for his liver transplant in October 2016. [This would cure his hemophilia eventually] On that same day, he received his last regular ship of factor VIII. I was hoping for that, so I could donate his factor to the island of Hainan, in China. I waited a few months because I really didn't believe the transplant would cure his hemophilia. It did! The product was shipped.

The next year while playing with my neighbors in the backyard on the day of the eclipse, in August 2017, I got a message asking if the medical team in China should use the factor we donated to try to save a young boy’s life. He was only four years old, and had fallen and hit his head. Of course, I said yes, try it! I knew a mom there, Xiaohua Liu, who has a son with hemophilia and she handles shots and factor needs on the island. A few years ago, I even bought her a new moped so she could get around better to help the other hemophilia families. This is China: she risked jail, while gathering the hemophilia community at the island, and then petitioning the government for more factor for the patients. Instead of going to jail, she won the petition and got nine boxes of 200 IU of factor a month! This was a success but hardly enough. My brother’s factor came in much larger assay sizes: 4,000 IU every other day. The little boy needed bigger shots for physicians to even attempt the surgery. They had to take a piece of his skull off to relieve pressure on his brain. I know he would have surely died without this gift of factor VIII. Mostly, I thought I would just be keeping children from having to be wheelchair-bound. Saving a life wasn't really in my mind when I sent the box. 
After head injury: 70% die soon after getting in this condition

Here's the thing: my brother Frank died when he was 19. I was 17 years old then. Back in 1982, they didn't even try to give him a proper dose of factor, as I remember. Maybe they didn't have the surgery option ether. I really don't know. All I know is about 15 hours later he was dead. Saving this boy’s life— and I don't even know his name— in a way helped heal me. That event back in 1982 broke me. It would be years later before I cared about my future or school again. Helping to save this boy’s life was a great thing for me, and for the boy and his family. Those few times I found some factor in my luggage or stuffed in the back of the cabinet where I keep all the hemophilia stuff certainly can save a life. Even just helping to relieve the pain of an untreated bleed for a person living in a country where factor is rare.

Tweezers holding piece of his skull,
taken out to relieve the pressure 
The boy lived, and here he is in this video. There are children in need of factor all over the world. Donate factor here. Save a life there.

Steve Riedle has hemophilia, and is the inventor of Noseebudd, a therapeutic device to help stop nosebleed. You can purchase a Nosebudd at nosebudd.com

Recovery
Boy with his baby sister at
birthday party




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