Cystic Fibrosis

Cystic Fibrosis is a life limiting inherited genetic condition caused by a faulty gene. The faulty gene controls the movement of salt and water in and out of cells.

Courtney’s Story

My dad and I are on a mission to raise money and raise awareness of my condition in the Channel Islands especially because it is very lonely for me as it’s such a small community in Guernsey.

After being on the radio and TV numerous times, this journey my dad and I have been on in such a short amount of time has made me feel more comfortable with my condition and in a way accept it almost, because this is who I am! I know it’s not going to change and I’m determined, as is my dad to help others in the Channel Islands feel the way I do about it!

Being so open now about my cystic fibrosis has made me feel like I’ve had a massive weight lifted of my chest! (see what I did there) – if only… ha ha!
Anyway I was never as such an open book about it because I didn’t want the sympathy or just 20 questions about it all. It would make me feel worse about myself, I wouldn’t want to do anything, see anyone or just let anyone in like my friends, family and boyfriend! I would just push them away as it was easier for me to deal with at the time! It felt like my only way out from it all!

Growing in confidence
You wouldn’t believe that I’ve been on radio a few times and the TV after reading this, but my outlook on it all has completely changed now! My depression I suffer with is not as much as an issue to myself and people around me 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 where doing was trying to help! I couldn’t see that unfortunately.

But now I’m a much more confident person in myself and just in general. I can phone and talk to people with confidence and not be frightened by it. I’ve let the people that mean the most to me back into my life and just become closer to them then I ever have – like my dad! Especially on the journey we are taking together as father and daughter!

So now it’s my turn to give back and help others who may be going through equally as rough times as I did and just help them through it! It may be easier said then done, but I’m willing to try my hardest to help others with the condition as they don’t deserve to go through this alone!

Even the parents can find it hard so my dad and I can be there every step of the way to help families the way they should be helped and get everyone to come together!

Mike’s Story

What is Cystic Fibrosis (CF)?
CF is a life shortening inherited disease affecting over 10,000 people in the UK and Channel Islands, clogging vital organs (the lungs and gut) with a thick sticky mucus. There is presently no cure.

What is the impact locally?
Mike’s motivation for this began with his daughter Courtney, now 20, who is the oldest of six Guernsey children (double that in Jersey) and the first locally to transition to adult care.

Having watched his 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 and understood ‘hidden’ disability, he decided that action was required, not only to help Courtney but the youngsters who would be treading in Courtney’s footsteps. 2016 also marked 10 years since he was diagnosed with a germ cell tumor, a form of testicular cancer, reinforcing his determination to give something back.

Courtney says: “CF can be a very isolating condition but it doesn’t need to be. If only we could share our knowledge and experiences amongst ourselves then others wouldn’t have to make the mistakes I’ve made. When the going gets tough we want there to be a support network for those who need it.”

What support is there locally?
The answer is currently very little.  The treatment of all these children is controlled by off-island CF Teams because the specialist care required is not available in the Channel Islands.

The CF Trust is the UK’s only national charity working to help families coping with CF and funding medical research to find a cure.

Setting up the CF group
With the support of another Dad, Richard, who contacted Mike (with a 12 year old daughter Emily also suffering from CF) they formed CF Guernsey and joined the Guernsey Disability Alliance (GDA), initially as a group, to continue to raise awareness of the condition locally but more importantly provide a medium through which a small group of CF sufferers and their families could come together, support each other and for the very first time, have a collective local voice.

Richard Bray, founding member said: “One of the issues with cystic fibrosis is that the individuals are kept apart from each other and so can feel isolated and alone.  What Mike has done is to bring families with members suffering from cystic fibrosis together to share experiences and also to show those with cystic fibrosis that they are not alone. This would not have happened without Mike, and I have absolutely no hesitation in adding my recommendation to his nomination.”

GDA membership
Executive Director GDA Karen Blanchford commented “Mike has been tireless in his efforts to both make people more aware of the condition, and also in his amazing fund-raising endeavours. Through the GDA’s ‘We All Matter Eh?’ initiative we have worked with Mike and the charity to enhance local awareness of the challenges Courtney and others with CF face on a daily basis. He is a very worthy nominee for this award. CF Guernsey is a small but proactive charity and Mike has understood and embraced all the benefits the GDA’s collective approach can offer.”

Fundraising – Gobi March
In July 2015, Mike announced that he would compete in the 2016 Gobi March, a 250km, seven-day, six-stage, self-supported, endurance footrace across some of the most remote, varied and extreme terrain on the planet, to raise money for the CF Trust.

He also set himself the goal of raising awareness of CF locally for the small group of Guernsey and Jersey children suffering from this disease. Over the year leading up to his challenge these goals expanded and developed, leading him to set up one of the island’s newest registered charities, Cystic Fibrosis Guernsey.

The challenge Mike set himself becomes all the more daunting when you know that he is 51yrs old and had never run a marathon before, let alone consecutively with a double marathon on the penultimate day, across mountains and deserts, carrying a 25lb ruck sack, with all his food, clothes and survival equipment.

So in addition to a rigorous fitness and training programme Mike began reaching out across the islands to appeal for donations and support, writing to the MSG in Guernsey and the respiratory consultant in Jersey, asking them to pass on letters to other CF families explaining his intentions, being interviewed by the Guernsey Press and appearing numerous times as they followed his progress across the Gobi Desert, setting up a CF Channel Island Facebook page to share information, being interviewed with his daughter on BBC Radio Guernsey, Island FM and appearing on Channel ITV news.

Raising awareness, empowerment and voice
Mike’s daughter Courtney had never opened up publicly about her very personal battle with CF so persuading her to talk to the Guernsey Press and was a huge step and a fantastic way for her to develop skills that she can take forward into her life. Taking confidence from this, she has now spoken live (twice) on BBC radio Gsy with JKT, about CF and what it means to her, as well as being interviewed by CTV.

Quote Courtney: “This was a whole new experience for me and was quite daunting at first. But I am pleased that I have been getting the message out there and couldn’t have done any of it without my Dad’s constant encouragement and support.”

Channel Islands – building relationships and support
Bringing the Guernsey Jersey CF communities together is fundamental to CF Guernsey’s goals. Drawing on the friendly but competitive spirit between Jersey and Guernsey CF Guernsey aims to take over a selection of Guernsey teams to take on Jersey in the annual “Balls of Steel” event in January 2017.

“Balls of Steel” is an established event that raises money for medical research into CF and other local Jersey charities. This event involves many teams from the business and finance sector in Jersey. CF Guernsey is planning on being the first Guernsey charity team to travel across to compete with and against Jersey colleagues, with the broad aim of highlighting the needs of the CF community across the islands and bringing them together to raise money in what is a challenging but light hearted fun event.

Where to next? Spreading the word
Almost a year on from declaring his intention, Mike successively completed the 2016 Gobi March in June this year, raising over £10,000 pounds (with money continuing to come in). Confident and buoyed by its fund raising achievements and positive media attention, CF Guernsey became a registered charity in July 2016 and has set itself a list of ambitious tasks as they now focus on raising money for their new local charity, bringing the Guernsey and Jersey CF communities together and improving those with CF opportunities and quality of life. These tasks include encouraging and if necessary ‘enabling’ the membership of sporting organisations to maintain healthy lungs, the creation of a CF Guernsey website, providing an information hub for local families, newly diagnosed families, CF families thinking of re-locating to the islands as well as the wider community and the launching of a video and factsheet explaining the challenges of living with a disability like CF, to assist in breaking down barriers and pre-conceptions about their disability.

Richard Bray: “Mike is, quite frankly, an inspiration.  At a time when he was training to run a stupendous amount of miles across the Gobi desert he brought together a group of people to form a Guernsey based CF charity as well as coordinating with the Jersey cystic fibrosis community and the Guernsey disability alliance.”

https://www.facebook.com/CysticFibrosisChannelIslands/

https://matter.gg/our-stories/hidden-disabilities/

Charity number CH531