Under-10s Yalding and Laddingford football team take on head shave for five-year-old with rare genetic condition

An under-10s Yalding and Laddingford football team is taking on a head shave and ice bucket challenge to help raise finds for a Yalding boy with a rare genetic condition.

Sid Cooke, 5, was treated with the £1.8m single dose of gene therapy Zolgensma – the most expensive drug in the world – as a baby when it was discovered he had SMA1. Little Mix singer Jesy Nelson’s twins have recently been diagnosed with the same condition. Before this drug was made available, children with this disorder typically survived less than two years.

There is still no cure for SMA, but drugs and therapies help manage the condition and improve strength and flexibility. However, most therapies and much of the equipment needed is not available on the NHS, and families have to privately fund to cover what is needed so fundraising is inevitable for most families in this circumstance, given the extent of therapies needed is very expensive.

Ten-year-old Joseph Bodle, who plays for the Ospreys football team, is a neighbour of Sid and came up with the idea along with his mum Hannah.

The event will take place on Monday July 20 at Joseph’s home in Yalding.

Sidney’s mum Sophie, 37, said: ‘Currently we are trying to fundraise for house adaptions. We need to create a through-floor lift for Sid, but because they are so big, we need to build an extension to create an accessible bedroom and bathroom too. He’s a big boy for his age, and that combined with low muscle tone means that carrying him around the house has become dangerous, particularly going up and down stairs.

‘He’s 25 kilos and 110cm, so it’s not like lifting a kettlebell at the gym – it’s much more difficult than that – risky both for us, his parents, and for Sid. There have been multiple times when we’ve nearly dropped him. And last year he broke his arm just falling off the toilet. We’re at a point now where we’re desperate to make our home accessible to him, but obviously that comes with a huge price tag - £120,000 for the building work, then around £18,000 for the lift itself.

‘We do our best but it’s becoming more and more of a struggle for me and his Dad, Aden – we have both slipped discs in our backs and Aden is awaiting an MRI.

‘Every day which passes is more of a risk. We are hoping people will get behind us with this, our largest fundraising challenge and, as ever, are hugely grateful for every penny donated.

The family is being supported by children’s charity Tree of Hope, which helps families raise money for children and young people like Sid for medical treatments and healthcare services not freely available to them through the NHS and social care. The charity provides fundraising guidance, campaign development, financial management, charity registration and emotional support from the Family Support team. Families like Sid’s benefit from having the support, tools and resources to fundraise effectively as well as access to gift aid, corporate support while also providing donor reassurance.

To sponsor the Ospreys or to donate to Sid’s house adaptation fund visit or https://www.justgiving.com/page/one-brave-shave

https://www.treeofhope.org.uk/get-involved/childrens-campaigns/help-build-sid-a-safe-space-at-home/