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Amanda Carnell

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I am walking 100km from London to Brighton for CCHS Support Group because is want to raise awareness and funds for CCHS.

153 %
£3,075.81
raised of £2,000 target
by 115 supporters
Donate
  • Event: London to Brighton Challenge 2017, 27 May 2017 to 28 May 2017

CCHS Support Group

We raise funds for conferences and events to link and support affected CCHS families

Charity Registration No. HMRC Registered

Story

Thanks for taking the time to visit my JustGiving page.  Here is my story. 

Congenital Central Hypoventilation Syndrome (CCHS) is a rare genetic condition which results in an abnormal development of the body’s automatic nervous system in early fetal life. The main consequence is a failure to automatically control breathing, which is always present during sleep, but may occur in some individuals when they are awake.  There are thought to be approximately 100 affected families in the UK.


Our eldest Son, Finn (8), has CCHS. He wasn't breathing when he was born and had to be transferred to Great Ormond Street Hospital in London at two days old. After months of testing, he was diagnosed with CCHS and had a tracheostomy tube placed into his neck at seven weeks old to ease ventilation. He remained in hospital for ten and a half months with me by his bedside. After discharge we contacted The CCHS Support Group who helped us come to terms with Finn's diagnosis and introduced us to other families with the condition. We were no longer alone and had people we could ask if we had questions about living with CCHS. We attended our first support group conference in 2012 where we met other families in person and talked to specialist physicians from around the world about the latest technology and research. We even participated in a research study after attending. Without the support group, and our network of parents, we would feel alone and would struggle to get through daily life. I love to see Finn meet up with his CCHS friends at the conferences and build life long support friendships.  Finn is now 8 and had his tracheostomy removed in 2014 and replaced with a mask. He has had to cope with more than most people ever deal with in a lifetime yet always has a smile on his gorgeous little face.

Anyone who knows me will know that until recently I was a gymphobic, sportsphobic and trainerphobic (I love my heels) person. I have decided to walk the 100km London 2 Brighton Challenge to push myself physically, mentally and emotionally whilst raising money and awareness for The CCHS Support Group. Most importantly to me though is the fact that I will do this for Finn, to prove that anything is possible if you put your mind to it. 

To find out more about CCHS please visit the website www.cchssupport.co.uk and join the Facebook page "The CCHS Support Group - UK - Awareness & Fundraising Page". 

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