BRAVE Louis Mushrow took part in a sponsored walk raising funds to raise cash to fight his unique combination of rare medical conditions.
The seven-year-old, of Blackbrook Avenue, Hawarden, suffers from the eating disorder Dumping Syndrome as well as Smith-Magenis syndrome (SMS).
It means that because he has never been able to eat or drink propertly he is tube-fed. He also suffers from mood swings and aggression, slowed mental and physical development and sleep problems.
As part of a Smith-Magenis Syndrome Foundation fundraising drive, friends and family took part in a sponsored walk around Chester Racecourse on Sunday as part of a UK-wide relay passing on a teddy bear.
Mum Lisa said: “It was lovely. We had 25 friends and familytaking part. We took our time. Louis had a go at walking around, he tried his best and he ended up in his buggy because he finds it physically demanding.
“Louis has loved all the attention. He thinks it is brilliant. He was cheering.”
Experts have told the family they are unaware of anyone else who suffers from both conditions, with SMS so rare that fewer than 100 people in the UK are affected.
Louis lives with his mum, dad Martin, brother Adam, 11, and baby sister Hannah, 20 months, and is a pupil at Ysgol Pen Coch in Flint.
So far the family has raised £2,000 as part of the teddy bear relay.
Lisa said raising awareness of the disease helps the family if Louis suffers from behavioural problems in public.
On Friday Louis will be passing on the teddy bear to a family in Doncaster to continue the relay.
“He will miss the bear,” said Lisa. “He has taken it to bed every night. He has been giving it lots of hugs and kisses.”
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