The parents of a boy from Nelson who has a rare genetic condition, that only affects around 1 in 30,000 people, have issued a plea to help him achieve independence.
Leon Watson has a progressive muscle wasting condition called Becker muscular dystrophy. He is also autistic.
The disease can be life-threatening and also impacts his independence in every day life.
After his condition deteriorated, Leon was recently gifted an electric wheelchair, after being on a lengthy NHS waitlist.
Now his parents, Lauren and Bradley Moore, are fundraising to make their garden more wheelchair accessible to allow him to spend more time outdoors.
“By the age of 16 there is a high chance Leon will depend on his wheelchair full time.
“We as a family are reaching out to get as much support as possible to transform our garden.”
Bradley said: “As his condition progresses he is reliant on a wheelchair and struggles to manage the stairs at home so he has a stairlift.
“Due to Leon's progressively worsening condition he is now moving over to an electric chair which was kindly donated to him, as the NHS waitlist for one is three years.”
Bradley said he has noticed a “drastic improvement” in Leon’s physical health since using his chair in public.
He said: “He has only just come to terms with using his chair in public, but physically we have noticed a drastic improvement since doing so, which has only been about three weeks as he was too embarrassed in school.
“Now I want to show him he can be independent, he can go to the shop himself or even come shopping just to get out of the house independently.”
Bradley said allowing Leon to get in and out of the garden in his wheelchair will “put him fully on the path to independence”.
He said: “Our only final obstacle is our garden, which is in no way wheelchair friendly for the kind of chair he has.
“He could fall, he can’t get out of the gate way and in and out of the house independently.
“Getting our garden adapted will increase Leon’s battle with his condition immensely and put him fully on the path to independence like the usual 12-year-old should be.”
At the time of writing £435 of the £3,000 target has been raised. Any surplus funds will be donated to Muscular Dystrophy UK.
According to the NHS, Becker muscular dystrophy is a muscle wasting condition which usually only affects males. It affects similar areas of the body to Duchenne MD but the symptoms tend to be less severe.
The symptoms normally begin during childhood. They’re often mild to begin with. A child with the condition might:
- learn to walk later than usual
- experience muscle cramps during exercise
- struggle with sports at school
- have difficulty running, climbing stairs and getting up from the floor
- have difficulty lifting heavy objects above their head
- have difficulty lifting their arms above shoulder level
- have learning and/or behavioural difficulties or autism
To make a donation visit the GoFundMe website for the fundraiser titled ‘Help make our garden wheelchair accessible’.
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