Philip's Story
Philip was born with Duchenne Muscular Dystrophy 12 years ago. Diagnosed at 3, in a powerchair at age 7, and now facing a few more bumps in the road. We've started this page to keep his family and friends up to date on what's happening with him and how he's doing, and share in the life of this amazing kid! Because Duchenne treats it's boys to deteriorating muscles, Phil's back is beginning to bend in ways it just ain't supposed to. That is going to be a drag at he continues to grow, so we are going to have that problem remedied now via spinal fusion. (Harsh...owie!). This is scheduled for September 7th, 2010. The other problem is that Phil has the appetite of a bird, and tips the scales at a whopping 64 pounds...not really a whole lot to spare, considering the severity of the surgery. So we have come to the conclusion that it would be good to proactively have a G-tube installed so that eating for nutrition is more of an option than a necessity, and he'll have all the calories he needs to recover. THAT modification is scheduled for Monday, August 2nd. We like to think of him as the Bionic Boy..."we can rebuild him...we can make him better than he was..." Phil has a Facebook page, and we are making this page together, and loves to get e-mail and messages. Of course your positive thoughts, best wishes and prayers are always appreciated! Phil is the epitome of LIFE at full volume, plus one. Most of us live our lives somewhere in the temperate zone...a normal 6 or 7. We laugh, we cry, we are angry, we are grateful, we are sad, we are happy...all in a sort of mediocre way. Not Phil. When he laughs, he can hardly breathe! When he cries, it rends your heart. When he is angry...duck!(Or plug your ears...lol). When he is grateful, it is humbling. To me, he is heroic beyond measure, and has taught me more in his 12 years than in all of my 46 combined. He is my patient, he is my teacher, he is my responsibility, he is my light-bearer. He is my undeserved blessing...he is my son!
First of all, you are a truly gifted writer...
ReplyDeleteMore importantly, your words paint a picture of an amazing mother. I am sorry to say that I am also a member of our unfortunate club; my son as DMD as well. My son, Tyler, just turned 12 on December 16th, and he was also diagnosed at 3 years old. Changes your life forever. Philip is such a good looking kid and it warms my heart to know he is surrounded by such love and by someone who is driven to help him experience all that he can. Question...is Philip on any medications? Tyler is on the typical meds. and his medicine cabinet rivals that of any senior citizen I have yet to meet! He's been on prednisone since age 3 1/2. He can still walk, but falls easily and his walk is more of a "waddle" really. He uses a power chair at school and we keep his manual chair in the back of my van for when he needs/wants it at home or when we go out somewhere. (We don't have an accessbile van yet, so that's why we keep his power chair at school.) How does Philip like school? Does he do well? Tyler is one of those DMD kids that also has the learning disabilites that sometime go along with...added bonus, you know? I didn't catch where you guys live...we live in Northern Virginia. Hope you Christmas is wonderful! Please give Philip our love and a fist-bump from a friend, Tyler, who is sharing his journey.
Nicki