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How brave little lad Daniel is taking rare illness in his stride.


SMILING and playing, Daniel Howell seems like a normal happy little boy.

But the brave youngster is actually battling a genetic condition so rare that it affects only one in every 200,000 people.

The 17-month-old has Cystinosis - a complex genetic condition which damages healthy cells in the body.

It means he is on a strict course of medication - which often makes him sick - is not able to eat properly, and battles a number of other problems.

The brave Redcar youngster is largely taking it in his stride.

But his family admits the lack of definite information about the condition - which affects around 150 people in the UK - leaves them concerned.

Mum Kelly Chilvers, 32, said: "We had never heard of the disease initially but immediately realised that the effect it would have on Daniel would be huge.

"It's such a horrible disease, which has an effect on the whole body and the worst part is at the minute there's just no cure."

As well as being on several medications throughout his life, the effects of Cystinosis mean that Daniel is likely to develop problems with his kidneys.

This will then slowly also progress to other parts of the body including the thyroid gland, eyes, liver, muscles, pancreas and brain.

As a result of the disease Daniel, who one day is likely to need a kidney transplant, is small for his age and has a very poor appetite.

He is currently fed through a tube via his nose leading straight into his stomach.

And the condition means he is susceptible to other illnesses.

Dad Colin Howell, 48, said: "He can go downhill very quickly and if he picks something up he usually gets taken to hospital because of it."

Because Cystinosis is such a rare condition, not a lot of information is known about it.

He was diagnosed at 11 months old after tests were carried out following concerns over Daniel's growth.

And Kelly admits this does worry the family.

"Because it's so rare no one has heard of it," Kelly, a finance business partner for Steria, Cleveland Police's support services provider, said.

"The worst thing is the unknown."

Colleagues, friends, and family have rallied around Daniel - brother to Thomas, 16, Harry, 14 and Kate, two - and his family since his diagnosis.

Fundraising activities have been held to raise money for The Cystinosis Foundation.

A fundraising event held by Steria staff, at Cleveland Police, raised more than pounds 390.

The charity day, at Kirkleatham Police HQ, in Redcar, included a cake stall, raffle, name the bear, guess the number of beads in the jar and stocks.

Assistant Chief Constable Sean White described Kelly as an "amazing lady" and said the force was glad to help.

Kelly's aunt Elaine Thomas also raised pounds 821 through a coffee morning.

And three former Cleveland Police staff will be doing the Lyke Wake walk across the North Yorkshire Moors, to raise money for the cause.

So far more than pounds 1,000 has been raised.

"We are just completely overwhelmed people are doing it," Kelly said.

Dad Colin, a businessman working in education, added: "What helps is that people just want to help in some way, shape, or form."

* Anyone interested in supporting the Lyke Wake walkers can visit * Cystinosis is a genetic condition in which both parents carry a faulty gene and pass it on. The sufferer has to have both faulty genes passed on to get the disease.

* Cystine is an amino acid which everyone needs and cystinosis occurs when the mechanism that removes excess cystine from the cells breaks down.

* The acid then accumulates within every cell, preventing them from functioning. * This initially leads to kidney problems and progresses to other parts of the body, including the thyroid gland, eyes and liver. It can also cause impaired growth.

* Only one in every 200,000 children are born with the condition.

* There is no cure for cystinosis however research is being carried out to cure the condition and improve medicines.


BATTLE: Mum Kelly Chilvers with Daniel, left, and a picture from the family album of the youngster as a baby, above RARE CONDITION: A baby photo of Daniel, left FAMILY: Daniel with mum Kelly, dad Colin, sister Kate and brother Harry, above. The tot is also pictured above right and as a baby, right Pictures by PETER REIMANN
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Publication:Evening Gazette (Middlesbrough, England)
Date:Apr 9, 2012
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