LYMM twins Oscar and Sebastian, who suffer from a rare form of muscular dystrophy which means they can sadly no longer smile, have now raised an incredible £17,000 towards research during lockdown.
The boys, who suffer from Facioscapulohumeral dystrophy (FSHD), a genetic muscle-wasting condition that primarily affects the face, shoulders and upper arms, which can also cause weakness in the legs and rest of the body, sold over 400 tickets for a raffle for an afternoon “G &Tea” prize at the Church Green pub last weekend.
With their recent schools fundraising and everything else they’ve done this year, they’ve now raised over £17k.
Their next event is a comedy bingo zoom night on Sunday, 28 March, which is sold out.
Proud mum Kerry said: “The condition is very cruel and makes it physically impossible for them to smile anymore so it’s difficult to get a sense of how happy they are!
In February Oscar and Seb got their school – Cherry Tree Primary in Lymm- to “Go Bright in February” raising funds for Muscular Dystrophy UK.
The whole school held a wacky hair and bright clothes day to take part in Zoom lessons and made donations for the charity. Even the teachers and the head joined in with the fun!
The boys were diagnosed in 2019 with fascioscapulohumeral dystrophy (FSHD) – There is currently no cure or treatment for the condition.
They’ve previously done a 26 lap sponsored walk in the garden and a virtual balloon race to raise funds for the charity.
Mum Kerry added: “Oscar and Sebastian are such gorgeous, bright boys it’s utterly heartbreaking to see how much weaker they’re becoming every day- even the simple act of moving around is becoming more and more difficult for them.
They never fail to amaze us with their resilience and determination.”
Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. Further details at https://www.musculardystrophyuk.org
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My 2 grandchildren have the same condition