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£2,390.00
raised of £1,700 target
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David Rowley avatar
David Rowley

David's Lands End to John O Groats Ride for James and Gorlin Group

Cycling 1000 miles in 9 days to raise funds for Gorlin Syndrome Group because The group are a massive support

140 %
£2,390.00
raised of £1,700 target
by 68 supporters
Donate
  • Team members: Darren Walsh, Jody Hayes, John O Callahan
  • Event: Lands End to John O Groats for James and Gorlins, 09 Sep 2017 to 17 Sep 2017

Gorlin Syndrome Group

We support individuals with Gorlin Syndrome to access appropriate care and treatments

Charity Registration No. 1096361

Story

Thanks for taking the time to visit my just giving page.

I am planning to cycle just under 1000 miles from Lands End to John O Groats in 9 days with just over 40,000ft of climb with a great group of gents all raising funds for good causes.

Our son James was diagnosed with Gorlin Syndrome this year. And the Gorlins group have been fantastic at helping us deal with the implications of this and Helping with advice and general support. They also work to educate patients and medics on best practice treatments and preventive measures. Although predominantly U.K. Focused they help and inform worldwide and especially valuable to patients in country's with poor health systems and little expertise. The condition is made much worse by excessive exposure to sunlight and conventional cancer treatments like radiotherapy so knowledge is key. The group is voluntary and completely funded by donations so any money donated will make a massive difference.

It is a chronic genetic condition and relatively rare ,meaning many doctors have not heard of it or have limited knowledgeable in dealing with it. In short it is a condition where one of the bodies tumour suppressing genes is missing, significant increasing the risk of several cancers. Skin cancer is the most common symptom in the form of basal cell carcinomas (BCCs) and Jaw Cysts. 90% of sufferers have inherited the condition although this is not the case for James but will affect his decisions in later life with a 50% chance that the condition would be passed on to children.

The symptoms are not life threatening but can be life changing with the main problem being scarring and disfigurement from multiple surgeries removing the 100s of BCCs and jaw cysts that can form in a lifetime.

In James case he has so far had 1 operation to remove 3 BCC from his face chest and back and is due a  further operation shortly to remove a further 4 from around his eyes to limit scarring. James is very young to be having BCCs with most people not developing them until teens, so as parents the group has been a reassuring support. James is a happy lad in general and his main memory of hospital at present is jelly and ice cream post op so it is certainly not all bad for him!

We have also been fortunate with James treatment. We live close to a world class hospital in Queens Medical Centre, Nottingham with simply brilliant treatment from Dr Jane Ravenscroft in paediatric dermatology where James will receive the majority of his physical treatment. James has also been referred to a specialist team in Manchester who will advise on how the treatment is delivered. Everyone's experience of the NHS is a personal one but I can honestly say James care has been nothing but first rate.

Gorlin group is a fantastic organisation that has helped us and I hope I can repay this in some small way by raising money for them to help others. Thanks for reading the story and I am certainly grateful of any support you can give.

Photos

27
  • Darren and I starting 3 days of Easter training
  • +25

Supporters

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