Walking the British coast for CLIMB

Colin Snook, a retired firefighter, set off from Bognor Regis on New Year's Day to walk the British coastline in support of CLIMB (Children Living with Inherited Metabolic Diseases).

Once he arrived in Shoreham, Tina Biss, whose daughter has cystinosis, started walking with him, along with friends David Brand and Anne Woods.

"I just think he's an incredible person to have done what he has," said Mrs Biss, of north Shoreham.

"I decided to support Colin because my daughter, Kirsty, has a condition called cystinosis."

Cystinosis

When Kirsty was 18 months old she was diagnosed with cystinosis.

"She suffered from things like rickets and her hair was almost white '“ because of her kidney damage she was deficient in lots of elements," said Mrs Biss.

Now 17-years-old Kirsty takes 40 tablets a day to help replace the elements her body is unable to break down.

"Her kidneys are deteriorating but because of the management she hasn't had to have a transplant yet," said Mrs Biss.

"A lot children that have the condition have to have a transplant by the time they are about 12.

"We are hoping she won't have to have one until she is in her early 20s."

Award

The majority of the damage to Kirsty's kidneys was caused before she was diagnosed by crystals that form in her body.

Less than 200 people in the United Kingdom suffer from Cystinosis but Kirsty does not let the disease define her.

"She doesn't make a big issue of her condition," said 50-year-old Mrs Biss.

"She once got an award for the way she has coped and she got fantastic GCSE results, something like seven A*s."

Wick

Kirsty is now studying at Worthing College and is a member of the Wick Theatre Company, appearing in their recent award-winning production of Richard III.

Mrs Biss walked with Mr Snook from Shoreham to Worthing after presenting him with a cheque for 250, donated by the Marston Group.

She hopes to have raised a further 300 in sponsorship money.

"CLIMB are very supportive as a group," said Mrs Biss.

"When we first had the condition diagnosed it was obviously very rare and because of that you can't talk to people about what you're going through.

"CLIMB is just somewhere you can go to talk to people that understand."

Disability

Mr Snook returned home to Bognor Regis on Friday.

During his walk Mr Snook has celebrated his 72nd birthday, and worn out three pairs of boots.

When he was planning the project he met a teenager in the final stages of a metabolic disease that causes severe disability and premature death.

"This encounter had a profound effect on me and because of this I had no hesitation in nominating Climb as the beneficiary of my effort," he said.

"Because of the complexity and sheer number of metabolic diseases, Climb is not one of the best known charities so I hope my efforts raise awareness of its fantastic work as well as funds.

"For those affected, the need for such support is great."

Anyone who wants more information on metabolic diseases or making a donation to CLIMB can visit www.climb.org.uk

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