Derbyshire family praises support for boy, three, with rare disorder
- Published
The family of a boy with a rare muscle disorder have thanked a charity for sending them on days out following his diagnosis.
Lincoln, three, from Overseal, Derbyshire, was diagnosed with a rare muscular degenerative disorder called Duchenne muscular dystrophy.
There is no treatment for the condition.
However, the family said they had been supported through the diagnosis by a local charity.
Mum Steph said: "The condition affects everything: cardio, respiratory, vocal chords, heart, lungs, arms, legs - everything that's a muscle is affected.
"He can't jump. He can't run. When all the kids are playing, he's pretty much left behind.
"He struggles going up and downstairs. He can't speak very well because his vocal chords are affected."
She said following the diagnosis, last year, the family had been contacted by the Derbyshire charity me&dee.
"They paid for us to go away for a night to Gulliver's Kingdom in Matlock and we had two days in the theme park," she said.
"It was just what we needed at the time because we were just so lost."
Lincoln and his family have also enjoyed a day out at White Post Farm in Nottinghamshire.
The charity, based in Melbourne in Derbyshire, said it worked to help families when a potentially life-limiting - and often rare - illness was diagnosed, helping them enjoy time together away from the stress of hospital appointments.
Maria Hanson, who founded the charity, said: "We're here to make sure families can have special times together so that if the worst happens and a loved one passes away, they will have made some happy memories together."
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- Published31 January 2023