Meet Jared Connor. He is two years old. Jared has been diagnosed with a rare disease. He has Sanfilippo Syndrome. Children with Sanfilippo are missing an essential enzyme that breaks down a complex body sugar called heparin sulfate. These sugars slowly build up in the brain, stopping normal development and causing hyperactivity, sleep disorders, loss of speech, dementia and typically death before adulthood. Other complications include blindness, seizures, mental retardation and progressive neurological disease leading to becoming wheelchair bound and the inability to care for oneself. There is no cure …. yet. The disease is unknowingly passed on by parents who are carriers of the gene. Right now doctors can do little to treat Sanfilippo’s symptoms and nothing to stop the regression. There are various experimental treatments being testedworldwide to lessen the effects of this terrible disease. Though insurance may cover much of Jared’s medical care and doctor visits, many other experimental treatments, vitamins and dietary needs are not covered. While some money raised will be applied to these unpaid medical expenses, donations will also be used to fund medical research. Rare diseases such as this one currently get LITTLE if ANY monetary support, and therefore any hope for a cure is in our hands. Please browse our web site for more information on this disease and how you can make donations. Thank you for visiting |
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Sunday, June 8th, 2008,"A Day for Jared" - At FLEX Fitness, 1pm Saturday, June 21st, 2008, Harbor Cruise, Boston, 6pm Sunday, August 10th, 2008, Motorcycle Run at Harley Davidson in Everett, in the a.m. (rain date will be August 24th) |
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