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Something I would like to share with everyone is a story about my 3 year old daughter. She was born with a rare, genetic syndrome called Rothmund-Thomson Syndrome or RTS. RTS is so rare that it takes doctors quite awhile to diagnose it. While we were lucky with the doctors that we have seen, many of these children with RTS are not diagnosed for many, many years. RTS effects mainly the skin and the bones, although my daughter was also born hearing impaired. The rash that appears at approx 3 months of age is one of the first signs of RTS. Many children are born with shortened or fused bones in their arms and small or absent thumbs. There is so much that is not known about this syndrome and it needs much more research. Osteosarcome (bone cancer) is extremely high in this syndrome. I am working with other people who have made a support group for RTS and I hope to do some charity auctions in the very near future to help with our support group and the research group that is at Texas Childrens Hospital. I hope to be adding a website link shortly. Thank you for reading my story!
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