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The boy who couldn't be cuddled; EXCLUSIVE.

Byline: BY ANUJI VARMA

AS Katherine Chadbourne's baby son James began to cry she could only standby and watch helplessly.

Because she knew that if she tried to comfort her newborn child with a cuddle it would only upset him even more.

"James never had eye contact with me for the Urst year or two of his life," Katherine, 36, explained.

"That was really hard for me - but he didn't like being cuddled either which was even harder. When he cried, which was rare, he'd cry even more if you tried to comfort him.

Diagnosed "It isn't a pleasant thing to do - watch your child cry without being able to console him, but that was James.

"Yet doctors didn't know what was wrong with him."

James, now seven, was eventually diagnosed with M-CMTC, an extremely rare life-limiting condition which left him with an enlarged brain and means he cannot talk or walk.

Sadly, as a carrier, it is unlikely that he will live beyond his 15th birthday.

Yet Katherine, who lives with fiance Phil and other children Ashley and Samantha in Burton-on-Trent, Staffordshire, refuses to crumble.

In fact, she is the most positive mum you could possibly meet, despite also going through two meningitis scares with James.

She said: "Too many people concentrate on the things that James can't do.

"But I'm not like that. To me James is James. He has a great smile and a very cheeky personality. His chuckle is highly infectious.

"He's always been like this. I think it would be harder to accept if he had been born normal and through an accident developed these problems as you would dwell on what he once was like."

James was born with the condition, but doctors failed to spot initial problems. It was only through Katherine's perseverance that he was eventually diagnosed with MCMTC.

"A lot of syndromes and diseases are unknown and as a result I went to the group Syndrome Without A Name at Urst," she said.

"I was worried when he was eventually diagnosed, but I have a very good coping mechanism and I just go on autopilot and get things done.

"Now James is doing quite well for his condition."

Supermum Katherine has even found time to plan her wedding to lorry driver Phil, 34, who she met through friends.

Proposed "We got together in January this year, he proposed in April, and we're getting married next August," she said.

"Phil is great with James and the other children. He knew all about the situation because he was a friend Urst and he's really understanding."

Acorns Children's Hospice has also been a huge support to Katherine. The organisation, which is marking Children's Hospice Week tomorrow, offers respite care for James so that his mum and the rest of the family are able to go on holidays.

Katherine said: "Having Acorns in our lives to support us through this journey has given us freedom. It also helps James to have some fun away from home in an environment which really suits his needs.

"He is very sensitive to loud noises and this can put restrictions on family days out with my other children.

"When James goes to stay at Acorns it allows the rest of the family to take holidays and spend time together doing things we wouldn't usually be able to do with James.

"And at the same time we know that he is enjoying his own miniholiday at Acorns."

anuji.varma@sundaymercury.net

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CHEEKY: James's laugh is infectious, says mum Katherine
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Publication:Sunday Mercury (Birmingham, England)
Date:Sep 21, 2008
Words:591
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