Sunday, April 26, 2015
25 days to go
25 days to go! I was talking with friends earlier about how Corey's hair and face has changed over the years due to treatment he has received. So todays post is photos of Corey through the years. He had chemotherapy which made his hair fall out, cyclosporin which made his hair grow back, everywhere, and steroids which made him gain weight all before he was 3! Donate at www.justgiving.com/mpsabseil
26 days to go
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.
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.
27 days to go
27 days til we drop 80ft! Phillip Butterfield Shane Jeffery Kate Davies please sponsor us at www.justgiving.com/mpsabseil
Today I will tell you about Corey's knobbly knees!
He has knock knees - there is approx a 10cm gap between his ankles when his knees are together. Corey's bones haven't developed properly and he will have surgery within the next few years to straighten them up. This involves putting plates in his legs in 4 places to stop his bones growing on 1 side therefore allowing the other side to 'catch up' and straighten his legs.
We see an orthopaedic surgeon every 12 months at Bristol Children's Hospital.
Corey wakes up in the night sometimes, complaining that his knees hurt, usually after soft play!
He has knock knees - there is approx a 10cm gap between his ankles when his knees are together. Corey's bones haven't developed properly and he will have surgery within the next few years to straighten them up. This involves putting plates in his legs in 4 places to stop his bones growing on 1 side therefore allowing the other side to 'catch up' and straighten his legs.
We see an orthopaedic surgeon every 12 months at Bristol Children's Hospital.
Corey wakes up in the night sometimes, complaining that his knees hurt, usually after soft play!
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