Pub ‘Bike Night’ to raise funds for five-year-old with genetic condition SMA1

A Matfield pub is holding a ‘Bike Night’ on June 3 to help raise funds for a local boy with a rare genetic condition.

Bikers are invited to The Star on June 3 from 6pm for a BBQ or pizza and to chat all things motorbike. A part of the proceeds from the food sold will be donated to help house adaptations for Sid Cooke, now aged five, who lives in and has SMA1.

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.

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 donate to Sid’s house adaptation fund or find out more about the Bike Night visit: https://www.treeofhope.org.uk/get-involved/childrens-campaigns/help-build-sid-a-safe-space-at-home or https://www.justgiving.com/page/jay-trievnor-1