Six-year-old girl’s cycle challenge for best friend with genetic condition SMA1

A six-year-old Kent girl is taking on a six mile bike ride challenge to help raise funds for a Yalding boy with a rare genetic condition.

Jessica Spree, who lives in Larkfield with her mum Catherine O’Donnell and dad Darren Spree, used to live opposite Sid Cooke, who was diagnosed with SMA1 as a baby. The pair attend the same school and are best friends.

Sid, aged 5, was treated with the £1.8m single dose of gene therapy Zolgensma – the most expensive drug in the world – 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.

Jessica’s Mum Catherine, who runs a hot tub hire company All Seasons Leisure Hire said: ‘We used to live opposite Sid and have known him and his family since he was very young. Even though we have moved to Larkfield now, we are still close and Sid is Jessica’s best friend. They are such a sweet pair.

‘Sid’s parents are such special people and they have all been through so much. We’re really keen to help them get the house adaptations they so desperately need and every little helps.’

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.

‘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 Jessica or to donate to Sid’s house adaptation fund visit https://www.justgiving.com/page/catherine-oconnell-1788122457444 or https://www.treeofhope.org.uk/get-involved/childrens-campaigns/help-build-sid-a-safe-space-at-home/