Tuesday, April 29, 2008

Here is more on Tyler Jenkins. This time he is on a local Washington, DC television station. This is a better segment.

We got the Fanconi directory yesterday from the Fanconi Anemia Research Fund. I think I am going to write an email to the family support coordinator and suggest she reach out to Tyler's family. I am sure that Cincinnati Children's has given them resources, but just in case.

Martinsburg Boy Diagnosed With Rare Blood Disease

Tyler Jenkins is a typical ten-year-old, he loves video games, watching football and eating junk food. But Tyler is dealing with something so atypical and his parents are sick with grief.

"I just don't understand. He's ten-years-old. If I could trade places with him, I would. I've been here long enough. Just to make him better," said Charles Jenkins, father.

Tyler was diagnosed in March with Fanconi Anemia, a genetic blood disorder that leads to bone marrow failure. "I'm real sad about it. I don't want to go through it but I know I gotta go through it to get helped," said Tyler. "I just cried and cried for days because I'd already told this was much worse than leukemia," said Tyler's mother Kelly.

Tyler was born with deformed thumbs, a symptom of the rare disease, and he recently developed skin discolorations. He is constantly tired. His blood doesn't clot properly and a simple cut could kill him. His parents had to pull him out of school to keep him safe. "School is my worst enemy," Tyler said.

Tyler's little sister Kaelyn may have the disease too. Test results are pending. Kaelyn is likely Tyler's best shot at a bone marrow match. In the meantime, the family is praying and living each day the best they can. "We just try and cherish every day we have with him because it might be our last," said Mr. Jenkins.

The family will move to Cincinnati soon where they'll spend six months at the Children's Hospital. It's one of two hospitals in the country that treats people with this disease. Tyler will undergo chemotherapy and radiation there and will be kept in isolation.


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