Fundraising News
Tour de France mountain climb for Holmfirth child with SMA1
15 May 2026
A North Derbyshire man and his family are taking on a gruelling French mountain cycle climb in France to help raise funds for his former colleague’s son who has a rare genetic disorder.
John McDonnell, 43, a social worker who lives in Clowne will be cycling up Mont Ventoux in Provence on May 25 with his brother Paul McDonnell, 42, who lives in London, plus sister Rebecca McDermott, 45 and nephew Josh McDermott, 21, who both live in Chesterfield.
The mountain is a regular Tour de France stage, with a height of 1,910 metres and the climb up an epic 21.8km.
Oscar Steel, now aged three who lives in Holmfirth, West Yorkshire, was diagnosed with type one spinal muscular atrophy (SMA1) 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.
John, who is a former colleague of Oscar’s mum Kayleigh said: ‘My brother and I are keen cyclists and enjoy the Tour de France, so this Mont Ventoux climb is something we’ve wanted to do for a while.
‘We’re really excited that my sister and nephew are joining us too – they are less used to cycling than we are so it might be quite a challenge!’
‘I wanted to do what I can to help with all the therapies and equipment Kayleigh has to fund for Oscar. He is such a great kid, so resilient and keen to not let anything stand in his way, in spite of his challenges.
This is a mountain climb for me but that’s just one day. Oscar has to surmount his own mountains every single day.’
Oscar’s mum Kayleigh Steel, 38, an independent reviewing officer, said:
‘Oscar is a lovely, smiley and happy little boy despite his devasting condition and tough start to life. He has a feeding tube and various other equipment to support his breathing and lung function. He is a wheelchair user though he can stand with a frame. Physio is extremely important for him to help gain as much independence of movement as possible and eventually as he gets bigger we will have to fund significant house adaptations.’
‘As Oscar’s parents we’re determined to give him the best quality of life possible. He is a joy to be around, he loves cars, Lightning McQueen, singing, playing with his sister Edie and new little brother Finn, and Paw Patrol.’
We’re so grateful to John and his family for taking on this challenge for us. Every penny really counts and can make such a difference to Oscar’s life.’
Oscar's mum
Oscar’s family is being supported by children’s charity Tree of Hope, which helps families raise money for children and young people like Oscar 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 Oscar’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.
‘We wish Oscar and his family all the best with their fundraising activities and are pleased to give them support in reaching their fundraising goals.’
CEO
To donate to Oscar’s fund or learn more about him, visit https://www.treeofhope.org.uk/get-involved/childrens-campaigns/support-oscar-the-brave-to-live-his-best-life-raising-funds-and-awareness-of-sma-type-1/
To sponsor John or learn more about the Mont Ventoux climb, visit https://www.justgiving.com/page/mcdonnell-mcdermott-mont-ventoux
