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His battle with Hurler Syndrome |
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Caleb was born December 6, 2000. For the first three months of Caleb's life he wore a cast because doctor's thought he had club feet. At 3 months he contracted RSV and had to spend five days in the hospital. At age 6 months, he got Spinal Meninigitis and had to spend another 3 days in the hospital. At 9 months Caleb caught Pnuemonia. On January 7, 2002 he was diagnosed with Muccopolysaccharide Storage Disease (MPS), called Hurler Syndrome. Hurler Syndrome is a rare genetic disease. It is a mucopolysaccharide storage disease disorder. Mucopolysaccharides are long chains of sugar molecules used in building connective tissues in the body. Children with Hurler Syndrome are missing the enzyme alpha-L-iduronidase necessary for breaking up the mucopolysaccharides. As a result, the mucopolysaccharides remain in the body causing progessive damage. Hurler is a progressive devastating disease. Babies
afflicted We would like to thank everyone for the donations. You will never know how your generosity has lifted us up in our darkest hours. Right now, we are back at work and doing okay. There are still alot of children and their families that need your help. Please give to those that need it most, like the children on the links page. If you would like to be added to Caleb's mailing list and receive update notices on Caleb's struggle with hurler syndrome, please enter your email address: |
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with Hurler Syndrome seem to develop normally in the first year of life,
but as more and more damage is done to their cells, they begin to show
signs of the disease. The brain, heart, liver, spleen and bones are
usually affected. Other symptoms include course facial features, cloudy
corneas, narrow airways and some children have chronic runny noses and
ear infections.