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Hi, my name is Chelsey and I am 5 years old!
My mommy is going to make my very own web page soon! But in the mean time, I am sharing this page with my brother! Keep reading, to find out all about Kraigy!
I love school, too, I am in Kindergarten this year. I love to dance, play soccer, and play with my friends. I also love to play with my Barbie's!
Hi, my name is Kraig. I am 6 years old, I attend school at LeClaire Elementary. My mommy says that I am special because I was born with something called MPS (Mucopolysaccharidosis), boy that's a mouth full. It means that my body is missing an enzyme, so I can't properly break down complex sugars, my body stores them. It is very rare, it only affects about 1 in 150,000, and only boys are affected.
When I was a baby I was really sick a lot. I was in the hospital with pneumonia a few times, I had lots of ear infections, and I sometimes had trouble breathing. One day we went to see a special doctor called a Geneticist, he ran a lot of tests, I really didn't like that. Then a few weeks after my 3rd Birthday, the doctor told my mommy and daddy that I had Mucopolysaccharidosis Type II (you can also call it Hunter Syndrome). That made my family really sad.
Mommy and daddy wanted to know what could be done to help me, and the doctor told them that the only treatment available is a Bone Marrow Transplant, but that they could only do a BMT if I was under 2. Well, since I was already 3 when I was diagnosed, they told mommy and daddy that they could only treat my symptoms, not cure me from MPS.
The older that I get the more that MPS is affecting me. I can't hear as good as I used to, so now I have to wear hearing aides. My joints are getting stiffer now, too, it is hard for me to use my hands, and I sometimes fall down. I have a special stroller that I use sometimes when my mommy takes me shopping, it helps me when I get tired and don't want to walk. I can't talk as good as the kids my age, so it is sometimes hard for people to understand me.
But there are a lot of things that I like to do. One of my favorite things is playing basketball and I also am a huge fan of Barney! (see his picture next to mine?!?) I love to be outside, I help my dad feed the animals on our farm, I ride my bicycle, and I have a lot of fun playing with my littler sister Chelsey. (you already met her, her picture is right above mine!) She likes to help me do the things that I have trouble with. She even had to have special tests done after the doctors told mommy and daddy that I had MPS, because the doctors think that she might be a carrier of MPS. We still aren't sure about that yet.
My mommy and daddy really want to help me have a better quality of life, so they are trying to raise money so that doctor's can find a cure for MPS. They hope that some day Enzyme Replacement Therapy will be available to treat MPS Patients.
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