Parents’ daily struggle as son battles rare condition

Reporter:

Matt Jones

THE family of a seven-year-old battling a unique combination of rare diseases has spoken about his condition.

Louis Mushrow, of Blackbrook Avenue, Hawarden, suffers with the eating disorder Dumping Syndrome as well as Smith-Magenis syndrome (SMS).

It means he is tube-fed after never being able to eat or drink properly and also suffers from mood swings and aggression, slowed mental and physical development and sleep problems.

Mum Lisa, a nursery nurse and dad Martin, are now hoping to educate the public about the conditions affecting their “little star”.

Lisa said: “Because of the dumping syndrome he has never eaten or drank properly since birth. He is fed through a tube from a pump on his back.

“The Smith-Magenis syndrome (SMS) is so rare fewer than 100 people in the UK are affected.

“We have spoken to experts who said they are not aware of anyone else with both conditions. He is one of a kind.”

SMS also affects facial features.

“We need to be aware 24 hours-a-day with him,” said Lisa.

“It can be hard work. We have not had a full night of sleep in the seven years since he was born.”

Louis, who also lives with brother Adam, 11, and baby sister Hannah, 20 months, is a pupil at Ysgol Pen Coch in Flint.

He loves watching TV, playing outside especially on his trampoline.

Lisa said: “He is a very sociable boy and likes to give hugs and kisses. Everybody knows about his condition and they treat him like one of the family.

“He has lots of cousins who love him to bits. He’s a lovely boy.”

The couple found out about both conditions separately with SMS being diagnosed at nine weeks.

Louis and his family are now taking part in a teddy bear relay with 15 other families across the UK to raise money for the Smith-Magenis Syndrome Foundation.

He will have the bear for two weeks before passing it on to a family in Doncaster and on July 30 Louis, his family and friends will hold a sponsored walk around Chester Racecourse.

Lisa said: “The foundation is a small registered charity that supports families and carers who have children or adults with Smith-Magenis syndrome.

“They provide information for professionals working with these families.”

She added: “We hope to raise awareness of SMS and at the same time raise money.”

If you would like to help sponsor Louis and his family contact 01244 534906.

See full story in the Leader

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