Thanks to research and advocacy, my son can enjoy a safer and healthier life

2013-04-15 16:01:33 by Randi Clites - Patient Family, as posted on the inside.akronchildrens.org blog.

Colton Clites Colton Clites

For as long as I can remember, I wanted to be a mom.  Most little girls dream of their wedding day, but I dreamt of holding my son and hearing him call me “mom.” I was fond of boys, because growing up I was a tomboy and had brothers and nephews that I was very close to.

My husband, Matt, and I found out we were about to have a baby just before our 7th wedding anniversary. Our whole family was excited. We didn’t find out we were having a boy until about 6 weeks before he came. Colton joined our family in February 2002.

After two weeks of unusual bleeding episodes, he was sent to Akron Children’s for testing to confirm a bleeding disorder. He was diagnosed with severe hemophilia, a genetic disorder that typically affects boys.

Having no prior experience with any chronic illness, Matt and I were both overwhelmed. When looking for information about his disorder, I was consumed with learning about the history of hemophilia. When I was a kid, I remembered watching the news for updates on the Ryan White story, but I didn’t know that he contracted AIDS because he had hemophilia.

Hemophilia is caused from a missing protein in the blood. It’s treated with products made from blood/plasma donations.

Unfortunately, along with Ryan White, about 10,000 other hemophilia patients contracted HIV from the tainted blood supply in the 80s and 90s. Most have passed away, gone way too soon.

colton-clites2 Colton

After the epidemic, families who had lost loved ones as well as adults treating these patients learned to advocate for changes in our legislation to make sure that history would never again repeat itself.

Every day I am thankful for their efforts. The fact that Colton and all hemophiliacs currently have safe products they rely on for treatment is a testament to their unwavering advocacy.

As I reflect on World Hemophilia Day today, I know that our day-to-day struggles with the disorder pale in comparison to others around the world.

Today is a day to be thankful for, and celebrate, all of the research and products that allow my son to live a much more active life side by side with his peers.

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