| Welcome to the Dilan Phillips Dyskeratosis Congenita Page |
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| Let me introduce myself: I am a "normal" 13 year-old boy that likes sports and my favorite baseball team is the New York Mets. I played baseball, basketball, and wrestling. About 3 years ago, I had a routine blood testing and the doctors freaked out. All of my counts, red, white and platelets, were about one half of what they should have been. I was referred to Hershey Medical Center (HMC) and they did Complete Blood Count and found that my blood counts were abnormal. After that the tested me right away for several diseases such as Leukemia, Fanconi's Anemia, and many other rare diseases that would cause my blood to be low. They even took bone marrow out of my hip twice to "take a closer look" at it. The doctors didn't know what was causing it, so they diagnosed me with Pancytopenia. They monitored my blood counts every two months and all of the counts slowly decreased. A year ago, they cross matched my brother as a possible bone marrow donor. He was a perfect match. My counts dropped this year to an all time low of about 25% normal and I had my first blood transfusion in June and then again in August. While I was in the hospital in June, several doctors saw me and based on my symptoms of Coat's Disease, nail dystrophy, general bone marrow failure, and skin blotches I was diagnosed with Dyskeratosis Congenita (DC). This is an x-linked genetic disorder that is very serious. They said I was born with it and my body became accustomed to the low blood counts so I felt "OK" most of the time. I get tired faster than most other kids but I can still play. The last two years I have been getting tired easier and sick more often. The diagnosis of DC is hard to take but then they started saying I needed a bone marrow transplant and that my brother, Derek, could not donate because of the potential of also having it. At this time he just doesn't the blood disorder like I have. 80% of DC patients have general bone marrow failure. In August the doctors called and told me that they found a perfect match (10 out of 10). Now I'll have to go to HMC for several tests. December 1st is the day that I am scheduled for my bone marrow transplant. The doctor said that I will be in the hospital 45 days. After that I will go to a special "hotel room" nearby because I will have to get special blood tests four to five times a week. They said that they hoped that I would be able to go home by Easter. That'll be six months away from home. My Dad is going to be there the whole time with me. In September of this year, Make-A-Wish Foundation granted me my wish. I asked to meet the Mets and throw out the first pitch of the game. I was able to go to New York City and stay in Doubletree Hotel in Times Square with my dad and my brother, Derek. While there I rode the Beast, toured the Statue of Liberty, and went to Toys R' Us in Times Square. On the day of the game my mom met us in the city and went to the game with us. Before the game started I practiced pitching with Heath Bell. He was so nice to me and made me laugh alot. He showed me the right way to pitch and said the crazier looking your windup the better the crowd would respond. When I threw out the first pitch it was a S T R I K E!!!! The crowd cheered. The Mets even gave us each a bag filled with a hat, Pedro Martinez bobblehead, and a shirt. |
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| Dilan on the field at Shea Stadium just before throwing a STRIKE for the first pitch. |
| Dilan's Make a Wish Wooddale United Methodist Church Fund Raising LINKS: Dyskeratosis Congenita DC Defined eMedicine Birth Disorder DC info Hershey Medical Center Main Site Pediatric Bone Marrow Transplant Dilan's Doctor |
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| Send me an e-mail: Dilan@PhillipsDC.com |
| To send "snail" regular mail to me: Dilan Phillips HC 8 Box 8712 Hawley, PA 18428 |
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| Dilan James Phillips April 5, 1992 - September 16, 2006 |
| Click the following to goto Dilan's Memories where you can see picture and download two songs made in his honor and memory.ENJOY! |
| Happy 18th Birthday Dilan!!!! |
| Let's Go METS |