News
‘Walk, cycle or ski across the Atlantic’ to help Bristol toddler with rare condition
10 Dec 2023
A Bristol Dad is inviting people to get involved in a ‘walk, cycle or ski across the Atlantic’ fundraiser for his two-year-old son Oakley, who has the rare genetic condition spinal muscular atrophy type 1 (SMA type 1).
The event kicks off this Sunday December 10 with a team marathon event at Bristol Grammar School Sports Centre
Oakley Moffatt was treated with the £1.8m single dose of gene therapy Zolgensma – the most expensive drug in the world – aged 14 weeks. Before this drug was made available, children with this muscle wasting condition typically would not survive for less than two years.
There is still no cure for SMA, but drugs and very specific therapies can help manage the condition and improve outcomes drastically. However, these specialist therapies and much of the equipment required are not available on the NHS and families have to fundraise to cover what is needed.
Oakley is a wheelchair-user, but thanks to many hours of rigours physiotherapy can now stand independently wearing supportive devices known as orthotics, but he will need ongoing specialist physiotherapy to give him the best chance of increased mobility and independence possible. The hope is that Oakley might be able to take steps one day, but he is unlikely to achieve this goal without further financial support.
Dad Nick Moffatt, 41, who lives in North Bristol with his wife Amy, 35, said: ‘Oakley has a fun and warm personality, he is very bright, communicative, clearly loves life and gives us smiles and love every single day. He is thriving thanks to the support he receives, and we are confident he could go on to attain greater independence and give a lot back to society. However, that comes at a cost and for him to continue to progress, we need further support financially to help Oakley reach his ultimate ability.’
‘Our monthly physio bill is £850, and our current priority is to fund specialist orthotics which cannot be provided on the NHS and which will cost us thousands. These orthotics can potentially reduce the chance of Oakley needing high-risk major surgeries on his spine and hips in the future.’
‘Other forthcoming expenses will include specialist therapies and an adapted Motability van – in total we need to raise around £50,000 by June of next year.’
‘We have been lucky enough to have the support of many friends, family and our community, as well as Bristol Council, who have already helped us fund house adaptations, and we are extremely grateful for that.’
The family is launching a challenge for people to take on a cycle, walk, ski, run or any other kind of human-powered transport to collectively travel 5100km before next summer – the distance from their home across the Atlantic to a founding NAPA Centre in Boston. NAPA (Neurological and Physical Abilitation Center) offers specialised physiotherapy which the family is currently also raising money for – they hope Oakley will be able to attend the brand-new centre in London at a cost of £5,865.
If you would like to take part in the event on Sunday December 10 (any time between 9.30am and 12.30pm) which kicks off with a team marathon (40km) sign up at https://www.eventbrite.co.uk/e/team-gym-marathons-fundraiser-for-life-changing-physiotherapy-tickets-765401174517?aff=oddtdtcreator
The family is also running an online raffle of a signed Jack Grealish Manchester City shirt donated by their friends – you can bid at https://www.justgiving.com/fundraising/oakleyacorn before December 10.
Oakley’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Oakley with healthcare needs which cannot be provided by the NHS and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance.
Tree of Hope Head of Marketing and Family Support Georgina Lowry said: ‘We’re delighted to hear that Oscar’s family are so well supported by friends and their community and wish Nick and his supporters all the best with their events.’
To sponsor Nick or to donate to Oakley’s fund, visit https://www.treeofhope.org.uk/fundraising-for-oakley/
