Three Peaks Challenge for five-year-old with genetic condition SMA1

A Maidstone couple is taking on the Three Peaks Challenge to help raise funds for a Yalding boy with a rare genetic condition.

Georgia and Liam Bristow, both aged 33, who live in Loose, will be climbing Snowdon, Scafell Pike and Ben Nevis over the next three months – a total distance of 23 miles and more than 3000 metres ascent.

Their first climb will be on Snowdon on July 5, when they plan to start at around one in the morning and reach the peak for sunrise.

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.

‘I’ve been training by going for walks with my two-year-old Rowan on my back. I’m looking forward to the challenge – we are an outdoorsy family but we’ve never done anything like this before!’

The couple will be climbing Snowdon on July 5, with Scafell Pike and Ben Nevis climbs planned for August.

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 Georgia or to donate to Sid’s house adaptation fund visit https://www.justgiving.com/page/georgia-bristow-1 or

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