News
Holmfirth man taking on the Yorkshire Dales Cycle Way for baby son with rare condition
09 Jun 2023
A Holmfirth man is taking on the 130-mile Yorkshire Dales Cycleway with four friends over just two days this month to help raise funds for his baby son who has a rare genetic condition.
Oscar Steel, 10 months old, was diagnosed with the rare genetic disorder type one spinal muscular atrophy (SMA) just ten days after his birth.
He was treated with the £1.8m single dose of gene therapy Zolgensma – the most expensive drug in the world – aged 24 days. 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 fundraise to cover what is needed.
Mum Kayleigh Steel, 36, a social worker currently on maternity leave said: ‘Oscar is a brave little warrior, in his short life so far he has been treated in 4 different hospitals in 2 different countries, stayed over 20 nights in hospital for tests and treatment, received a 4 month dose of steroids, had blood tests taken over 50 times and is enrolled onto a clinical trial in Italy for a secondary treatment called Spinraza, which although available in the UK, this is not funded by NHS England.’
‘Oscar is a lovely, smiley and happy little boy despite his devastating condition and tough start to life. As we write his story he’s feeding well, his respiratory function is performing adequately but he does have night-time ventilation support and he is slowly gaining movement in his arms and legs. The mobility gains are slow, and his neck and head control remain weak but we’re hopeful of progress as we move into this next phase of his rehabilitation.’
‘As Oscar’s parents we’re determined to give him the best quality of life possible. The gene therapy treatment alone is not enough, the hard work for Oscar starts now! To get him moving he will need intensive blocks of physiotherapy throughout the year at specialist clinics in the UK and abroad, weekly private physio, weekly hydrotherapy, monthly osteopathy and specialist orthotic equipment which is not available on the NHS – mobility aids are not funded by the NHS for children under 3.’
‘We are also committed to raising awareness of this rare condition and the need for newborn screening in the UK, something that is standard in other European countries and parts of America and Canada. We do not want other families or children to have to suffer in the same way.’
Oscar's Mum
The family has already raised over £11,000 through raffle, and donations and fundraising events from friends, family and community.
Dad Joe, 38, a marketing manager, is taking on the 130-mile cycle ride which includes more than 4500 metres of hill over just two days – June 17 and 18 – climbing with friends Tom Keighley, Stephen Lynch, Allan Munro and Ben Woodwiss. Their initial target is £25,000, but funding for therapies and equipment for Oscar is likely to be ongoing.
Oscar’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Oscar with healthcare needs and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance.
Tree of Hope CEO Gill Gibb said: ‘We’re delighted to hear that Oscar’s family are so well supported by friends and their community and wish Joe and his friends all the best with their cycle.’
To sponsor Joe or to donate to Oscar’s fund, visit https://www.treeofhope.org.uk/oscar-the brave/ or https://www.justgiving.com/fundraising/Cycleforoscar
