History

Journal History

Monday, November 04, 2002 at 09:11 PM (CST)

Hi everyone! My name is Devante'(B.J.). Welcome to my small corner of the world wide web. I am a 9 year old, who has Hunter's Syndrome(MPSII). This means my body is missing an enzyme, so my body can't break down sugars, my body stores them. My mommy says it is a very rare disease and there is no cure, only boys can have it. This is why mommy says"I am a very special little boy,a gift from heaven".
At birth I was a healthy 6lb.14.5oz. happy baby. Mommy says she noticed I was different when I turned a year old. She says I didn't walk until I was 18 months old, by that time I had over 9 ear infections, a number of sinus infections, and on top of all that I had severe hearing loss in my right ear and moderate in my left ear, severe developemental delays,severe behavior problems and insomnia.
I wasn't diagnosed until I was 3 years old. Many doctors where I live had never heard of Hunter's Syndome, so they couldn't tell mommy much about it. She worked hard day and night to learn all she could. Mean while I started school. I loved it, but now the teacher comes to my house because I am to weak to go to school. I miss the kids!
In January of 2002 I got very sick,mommy took me to the hospital. I was there for 5 weeks. While I was there I had to get a hole in my neck, with a tube called a trache tube. Mommy says this is so I can breath better (I can). I also had to get a hole in my belly, cause I can't eat through my mouth anymore cause I aspirate when I eat through my mouth (I miss pizza that was my favorite). I can't talk anymore either cause I have the Trache(I miss hearing my voice). I want to tell mommy I love her! I try to tell her with my eyes, now we hold hands alot more to make-up for my lost voice.
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