Susan Hermiston
Susan and Sam's page
Fundraising for CCHS UK
Story
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Sam has had CCHS since birth. Back then, we would never have imagined that riding a bike 170 miles in two days would have been a possibility for him !! Let's hope we make it !
We're hoping to raise some cash for the CCHS support group which helped and is still helping us, and other families in the UK . We are able to share experiences and discuss health issue's and help each other make life as normal as possible for our children and young people who are living with CCHS. This syndrome effects the central nervous system and causes many of the autonomic systems to be less stable . The main problem with sufferers is that they stop breathing completely when they fall asleep so need to be mechanically ventilated . Other issues include cardiac problems . The support group helps with research and enables us to share developments in dealing with this condition.
Sam has had CCHS since birth. Back then, we would never have imagined that riding a bike 170 miles in two days would have been a possibility for him !! Let's hope we make it !
We're hoping to raise some cash for the CCHS support group which helped and is still helping us, and other families in the UK . We are able to share experiences and discuss health issue's and help each other make life as normal as possible for our children and young people who are living with CCHS. This syndrome effects the central nervous system and causes many of the autonomic systems to be less stable . The main problem with sufferers is that they stop breathing completely when they fall asleep so need to be mechanically ventilated . Other issues include cardiac problems . The support group helps with research and enables us to share developments in dealing with this condition.