Tyler has been diagnosed with Fanconi Anemia (FA). This is inherited recessive gene disorder that usually results in bone marrow failure (aplastic anemia). Without treatment FA patients typically develop leukemia or other aggressive cancers. FA is so rare that 1 in 360,000 pregnancies are at risk and there are currently only about 1000 cases worldwide. For detailed information see www.fanconi.org
Tyler does not have alot of regular symptoms of the disease, in most case the children are shorter for their size and not very heavy, and we know Tylerman is a little bit chunky and not very short at all. (The kid wears the same size shoe as his momma) go figure.
The best form of treatment for Tyler is to have a bone marrow transplant. Kelly, Charlie, and Kealyn were tested yesterday for a donor match. The results are pending but if they do not match, Tyler will go on a national registry to find a compatible host.
The first week of May, Tyler will go to Cincinnati's Children's Hospital Medical Center for a series of tests to ensure his ability to endure the treatment. CCHMC has a center dedicated soley to supporting children and families dealing with FA. The CCHMC FA team is lead by Dr. Richard Harris who specializes in bone marrow failure and FA treatment. In 2005, Dr. Harris received a lifetime achievement award from the Fanconi Anemia Research Fund.
When the treatment begins, Tyler will spend 3-6 months at CCHMC to undergo the transplant and ensure there are no complications. Ronald McDonald House is available to support the family during his stay.
We thank everyone for all the positive support and prayers. We'll update this page as we receive information. Be sure to check out the pictures we've posted and we welcome all your thoughts and comments.
God bless!
Technical stuff
A Little bit about me
I will be 11 years old on May 31st and I live in Martinsburg, WV. I am really nice and I have good manners. I like playing video games with my best friend and I like to look at Naruto cards. I also like anything about the Revolutionary or Civil War. I went metal detecting one time but all I found was a door knob. But I know someone who found a musket and a little cannon ball in their back yard.
I can't go to school or play outside right now. I got this disease called Fanconi Anemia. It's really rare and only 1000 people have it. Every week on Monday I go to the doctor to get a needle. That's not good because I was diagnosed with a phobia of needles too. If my blood counts are really really low like 10000 blood cells, I might have to get a red blood cell transplant. Platelets are like when you get a cut or something, it heals them. But the most important thing is the hemoglobin. It's supposed to be 12point something and mine was 7.4. The other day it was down to 7.14.
I'm going to Cincinnati Children's Hospital to get fixed. I have to get chemotherapy and a bone marrow transplant. I'm going to be there for 6 months and for a month or two at a Ronald McDonald's house. My Mommy, Daddy and Kaelyn got tested the other day to see if they were a match. If they're not, I have to go into a national registry to find one.
I have to go to Cincinnati on May 5th so they can test me to see if I'm strong enough for the treatments. I hope I am. I'll write more about me after that.
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