It seems a long time since my daughter, Harriet, spent time in special care after she was born at the John Radcliffe Hospital, Oxford. At the time, we were bound up in our own world of feeding cycles, scrupulous hand washing and endless discussions about possible outcomes. The whole experience would have been unbearable were it not for the fantastic staff and also the family of the child in the next bed.
Matias was born on the same day as Harriet and was admitted to special care for tests. I can still remember the moment when Matias’s family received the diagnosis of Cri du Chat Syndrome, a rare chromosomal disorder that, in Matias’s case was profound; he would rely on his mum and dad for everything.
I ran the London Marathon in 2005; at that time it seemed logical to raise money for SSNAP (Support for Sick New-borns and their Parents www.ssnap.org.uk). It took the best part of seven years and a chance meeting at work with Matias’s dad for me to realise that raising money for the group that supported families and carers of those living with Cri du Chat would be a positive thing to do.
I wanted to raise a good amount of money but felt I needed to do something challenging to get people’s attention. Riding from Land’s End to John O’Groats had always been on my radar from a young age; I was at a time in my life where I had the fitness and means to attempt it. My appetite for bike touring had been whetted in 2009 and 2010 on a couple of 3 day mini tours: just me, a bike and a tent. I spent hours planning each day’s mileage and stop overs to make sure nothing would go wrong. Both tours were very enjoyable but I was glad to get back to the family on each occasion.
Cri du Chat Syndrome Support Group (CdCSSG)
CdCSSG aim to provide support to people with Cri du Chat syndrome by engaging with them and supporting their families, their carers and professionals. The CdCSSG will also strive to improve knowledge of CdCS by facilitating appropriate research into the syndrome with the hope of creating a better quality of life for all members of a Cri du Chat family.
Purpose: To make a positive difference in the lives of those with Cri du Chat syndrome
Business: Supporting family members and professionals who care for those with Cri du Chat syndrome. Supporting dedicated research that has the aim of providing a better quality of life to all affected by Cri du Chat syndrome.
Values: Those with Cri du Chat syndrome and their families can have complete, satisfied and rewarding lives. Cri du Chat syndrome does not in any way hinder families from achieving the opportunities open to other members of society.
The group has a great website which provides a lot of information about Cri du Chat as well as the projects it is involved in. Please take a moment to visit the site at www.criduchat.org.uk and learn a bit more about the challenges faced by those with Cri du Chat.
If Facebook is more your thing, pop by and say hi at www.facebook.com/#!/groups/309121369130066/
Continuing to raise funds….
I am committed to raising further funds and awareness for the group, the work they do is greatly appreciated and valued by those living with Cri du Chat, to continue doing this requires funding.
Cycling from Land’s End to John O’Groats provided me with an opportunity to write about the trip, my book is available as a paperback and a Kindle download. If you have a vague interest in the many uses of Sudocrem and wetwipes then this is the book for you.
All of the profits from book sales will go to CdCSSG, not just a percentage of the sales. Indulge me in my mid-life crisis and buy a copy today!