Mikes Personal Story
As a parent of a child with a life limiting condition I know how incredibly difficult it can be to know how to help your child, teenager or young adult through each phase of their life. No one teaches you how to explain to a defiant 9,10,11 year old, the long term importance of each and every set of medication and treatments or implications of their condition. Neither does anyone help or actively support your child come to terms with, understand and accept their CF, other than the occasional awkward chat with the psychologist at an annual review. It’s down to you and the family to somehow work it all out.
Having watched my daughter struggle through her teenage years at school, battling ill health. depression and more recently the daunting task of finding employment with a little known or understood ‘hidden’ disability, I decided action was required. In July 2015 I announced my intention to compete in the 2016 Gobi March, a 250km, 7 day, 6 stage, self-supported endurance foot race across some of the most remote, varied and extreme terrain on the planet, to raise money for the Cystic Fibrosis Trust. The CF Trust is the only UK charity working to help families coping with CF and to find a cure.
I also set myself the goal of raising awareness of CF locally for the small group of Guernsey and Jersey children suffering from the disease. The challenge becomes all the more daunting when you know that I was 51yrs old at the time and had never run a marathon before, let alone consecutively with a double marathon on the penultimate day, whilst carrying 25lb ruck sack with all my food, clothes and survival equipment for the week inside.
A rigorous fitness and training programme ensued as I began to reach out across the Islands to appeal for donations and support. Over the year leading up to the challenge the local goals I’d set myself expanded and developed. With the support of another Dad, Richard, (also with a daughter suffering from CF) who responded to my request for engagement and support, we began CF Guernsey, initially as a support group, registered with the Guernsey Disability Alliance. Our aim now became to not only to continue to raise awareness of the condition locally but more importantly provide a medium through which the small group of CF sufferers and their families could come together, support each other and for the very first time, have a collective voice.
In addition and much to my relief and joy, Courtney began to engage with the challenge as we began talking to the media and the interest in us and CF locally grew. Courtney had never opened up publicly (and rarely privately) about her very personal battle with CF, so persuading her to talk openly to the local paper, live on local BBC radio and more recently in interviews on TV, was a huge step forward for her
With the help of the local media, who followed my adventure through the Gobi desert with daily reports in the Press, I exceed my initial fund raising target of £5000. The final total went on to exceed £10000 of which I felt incredibly proud. On a personal note, my own goal dictated I at lest finishing the race and much to my surprise I was able to achieve a 19th place finish, coming 3rd in the over 50 age group as well as being the 2nd British person home.
With the success of the fund raising efforts and the obvious and growing support from others in Guernsey, Richard and I decided we should take the next step and make CF Guernsey the Channel Islands first locally registered CF charity.
Courtney when asked now says, “Being so open now about my cystic fibrosis has made me feel like I’ve had a massive weight lifted of my chest!” She goes on to explain, “I never have been an open book about it because I didn’t want the sympathy or just 20 questions about it all, which would just make me feel worse about myself. I wouldn’t want to do anything, see anyone or just let anyone in, like my friends and family or boyfriend. I would just push them away as it was easier at the time, it felt like my only way out of it all.” Courtney adds, “My outlook on it all has completely changed now. My depression is not such an issue anymore. I look back and think, wow I really don’t get why I did that to myself and others around me when all they were doing was trying to help.”
Courtney’s words tell me, that despite the best effort of a close and supportive family, CF sufferers sometimes need more support than has been available locally, up until now! CF Guernsey is a medium through which we can bring local families together to find that missing support, to share experiences and knowledge and importantly to show those with CF that they are not alone.