Head shave to raise funds for five-year-old with genetic condition SMA1

A Maidstone carer is shaving off his long hair next month on May 10 to help raise funds for the five-year-old boy he helps care for.

Tom Moore, 35, who lives in Maidstone, has been helping to care for five year old Sid Cooke from Yalding, Kent for six months. Sid was diagnosed with the rare genetic disorder type one spinal muscular atrophy (SMA) four months after birth, and his family are raising funds for house adaptations to help meet his needs.

Sid was treated with the £1.8m single dose of gene therapy Zolgensma – the most expensive drug in the world – shortly afterwards. 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.

Sophie went on to say: ‘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 find sponsor Tom or to donate to Sid’s house adaptation fund visit:  https://www.justgiving.com/fundraising/shave-for-sid or https://www.treeofhope.org.uk/get-involved/childrens-campaigns/help-build-sid-a-safe-space-at-home/