26 days - please sponsor me and Shane Jeffery and Kate Davies and Phillip Butterfield and Scott to abseil down Berry Head on Saturday May 16th wearing blue!
We are raising money for the MPS society. A charity who provide advocacy support and fund research to find a cure for these devastating diseases. Corey, Shane and Teresa's son, has MPS1 Hurler Syndrome.
Hurler syndrome is the severe form of MPS1. There is NO CURE. This is a life limiting disease and without treatment children have a life expectancy of less than 10 years. Even after treatment life expectancy is still limited. There is a 1 in 100,000 chance of having MPS1. Both Shane and I have a 'spelling mistake' in our DNA and Corey has inherited both our spelling mistakes. There is now a 1 in 4 chance of each of our children having Hurlers and this can be tested for prenatally with a CVS test at 11 weeks. There was no way of knowing that we were carriers of MPS until Corey was diagnosed. We have since had 2 affected pregnancies, Sophie and Nathan, and in 2012 we were blessed with Joshua who is either a carrier or completely unaffected.
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