TWINS Oscar and Sebestian Spink, who suffer from a rare form of muscular dystrophy, embarked on the fund-raising trail again with a “wacky hair day” at their local school, taking the total they have raised during lockdown to over £13,000.
Oscar and Sebastian, aged 10 from Lymm, got their school – Cherry Tree Primary in Lymm- to “Go Bright in February” to raise 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!
In addition, local retailers Sakarma handmade and Tropic by Mika have been running special promotions to raise funds through the month.
So far the boys have raised £850 in February, meaning they’ve now raised over £13k for MDUK since they started fundraising 12 months ago! They’ve set themselves a target of raising another £5k this year and are planning to attempt a sponsored indoor skydive when Covid restrictions are lifted.
The boys were diagnosed in 2019 with fascioscapulohumeral dystrophy (FSHD) – a rare, progressive muscle-wasting condition that slowly destroys muscle making any physical movement difficult and even affects their ability to smile. There is currently no cure or treatment for the condition and the boys will receive electric wheelchairs in the next few weeks that they will rely on to get around.
They’ve previously done a 26 lap sponsored walk in the garden and a virtual balloon race to raise funds for the charity.
Proud mum Kerry said: “Muscular Dystrophy UK has been a lifeline to us since their diagnosis but is losing a huge amount of income from cancelled events during these lockdowns. We’re trying to raise as much as we can to help them carry on with their vital support for us and other families affected by muscle-wasting conditions.”
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 to do as much as they can and are spending lockdown trying to learn how to play instruments. They want to be the first rockstars that use wheelchairs!”
Facioscapulohumeral dystrophy (FSHD) is a genetic muscle-wasting condition that primarily affects the face, shoulders and upper arms but can also cause weakness in the legs and rest of the body. It affects around 1 in 20,000 people and there are only around 2,500 people in the UK living with this condition.
Anyone who would like to contribute to the fund can do so at https://www.justgiving.com/fundraising/oscarandseb
Videos below show the boys telling the school about why they’re fundraising and teachers at their school getting into the spirit of the occasion.
Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. Further details at https://www.musculardystrophyuk.org