Hi, my name is Kraig. I am 16 years old and I attend school at Edwardsville High School. My mom says that I am special because I was born with something called Mucopolysaccharidosis Type II (MPS II), 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 mom and dad that I had Mucopolysaccharidosis Type II (you can also call it Hunter Syndrome). That made my family really sad.

Mom and dad 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 mom and dad 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. I had surgery for carpal tunnel syndrome so now my hands feel a little better. I have a special stroller that I use sometimes when my mom takes me shopping, it helps me when I get tired and can't walk any further. I don't talk very much anymore, so it is sometimes hard for people to understand what I want. 7 years ago in the summer I fell and broke my leg - OUCH!! I had to have something put in my leg called a "Nancy Nail" it was put in to fix the fracture. Then I had another surgery to remove it. My leg has healed and feels much better now. I have a lot of trouble sleeping because I have seizures at night and I have trouble breathing, too. The doctor says I need to use a Bi-pap machine at night, but I hate it. I go to the University of North Carolina in Chapel Hill every year to see lots of doctors. I was in a Natural History research study to help doctors find a treatment for Hunter Syndrome. Last March I had surgery on both of my legs and feet, the surgery was supposed to fix it so I could walk better. The doctors were trying to stretch my heel cords. There were a lot of complications with the surgery and I ended up in the hospital for 2 weeks. My feet are not perfect, but they are better than they were, but I sure don't want to go through all of that again, it was a rough recovery.

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! I love to be outside, I used to help my dad feed the animals when we lived on the farm and I love to ride my bicycle. My bike is so much fun to ride, I don't want to get off of my bike. I have a lot of fun playing with my littler sister Chelsey. She likes to help me do the things that I have trouble with. My favorite days of the week is Saturday, you know why? That's my special day with my grandpa. He always takes me for a ride in his truck, we eat chicken and french fries from McDonalds and if the weather is nice we go to the park. I always have so much fun.

My mom and dad 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 also want to help families dealing with an MPS diagnosis through family support programs established through the National MPS Society.
On July 24, 2006 we received the best news ever!!! The FDA approved a new treatment for patients diagnosed with Hunter Syndrome (the form of MPS that I have). We've been waiting for this treatment to be approved for a long time. The treatment is called Enzyme Replacement Therapy. Shire Human Genetic Therapies has developed a synthetic enzyme called Elaprase. I go to St. Louis Children's Hospital once every week and I receive Elaprase via IV infusion. I had a medi-port placed in my chest last year, because the nurses were having a very difficult time starting an IV on me each week. I was the third patient in the United States to start receiving Elaprase after it was approved by the FDA. I started my weekly infusions on August 31, 2006. Infusion day is very long. I arrive at the hospital at 8:30 AM and am lucky to leave by 3 PM. I spend the time either sleeping or watching TV. Since starting treatment, I have started to feel better. My skin is much softer and my tummy has gotten a lot smaller because my liver and spleen are starting to go back to normal size. We are very grateful for this treatment, but our hope is that there will soon be a treatment for ALL MPS and related disorders, or better yet a cure! Currently ERT is only available for patients diagnosed with MPS I (Hurler Syndrome), MPS II (Hunter Syndrome) and MPS VI (Maroteaux-Lamy).

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