Cameron's Medical Trip to D.C. .
Cameron's Medical Trip to D.C.
Cameron is a 5 year old little boy who has a handful of life threatening conditions: Hydrocephalus, Chiari Malformation, Relapsing Polychondritis, asthma, hearing loss, PIK3CA, MCAP Syndrome, Mecp2, Xq28 duplication, chronic infections, and hypermobility .The most severe being Pediatric Relapsing Polychondritis, which is a rare autoimmune disorder. His body is attacking his cartilage and destroying it. Currently he is losing cartilage in his ears. There is no cure and no medication that can stop this disease. Plus once the cartilage is destroyed it is gone for good. There are a few medications that can help slow down the disease. Cameron currently takes methotrexate (he has been on for three years) and up until this past fall it was helping to keep him from having flare ups. However his flare ups began to get progressively worse in the fall of 2017 that his rheumatologist added a weekly injection of Enbrel to try to stop the progression. Additionally this disease has caused him to have reoccurring sinus infections, arthritic pains in his joints, hearing loss and trouble walking for long periods. Cameron has a long list of doctors that he sees for all his conditions. Last year his family traveled the National Institute of Health (NIH) in Washington DC for 5 days and 4 nights to take part in a research study so the doctors can better understand this disease and hopefully create better treatments for it. Cameron, his parents and sister are scheduled to go back to NIH again this summer so that he can be reevaluated and continue being watched as this disease progresses. Once again his family will need to cover all expenses to get there, while we are there and to get home. This includes gas (as driving is cheaper and easier than flying for them), plus lodging and food and other expenses while on traveling and there at NIH. Any help is greatly appreciated as Cameron's condition is progressing and this research could prove to find a cure or at least better treatment.
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Kristi Lampkin, Main Contact
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