'Oscar the Brave': Morley boy raises funds for West Yorkshire child battling rare disorder
A 13-year-old from Leeds is selling hand-drawn cards to help raise funds for a three-year-old with a rare genetic disorder.
James Tortice, who has autism and ADHD, has made a name for himself in his hometown of Morley for his regular fundraising for various charities - something he started doing at just seven years old.
Oscar Steel, from Holmfirth, was diagnosed with type 1 spinal muscular atrophy (SMA) just ten days after birth - a rare genetic condition that often shortens a child’s life to less than two years.
At only 24 days old, he received a one-time infusion of Zolgensma, the world’s most expensive drug at £1.8 million. While SMA has no cure, new treatments and therapies can help manage symptoms, supporting Oscar’s strength, flexibility, and quality of life.
However, most therapies and much of the necessary equipment are not available on the NHS, with affected families often forced to fundraise to cover the costs.
Together, James and Oscar appeared on The One Show’s One Big Thank You this summer after the 13-year-old held an exhibition at Basement Arts in Leeds to raise funds for both Oscar and an ADHD charity.
James’ mum Karen Emmott, 45, who is a friend of Oscar’s grandmother Sharon, said: “James has always loved drawing, but he’s also always loved the fundraising element of it – I don’t think he’d keep at it if he didn’t have that element too.
“For Oscar, the card has a drawing of a lion – it is an animal Oscar likes, and we thought it also represented his bravery and strength.”
Oscar’s mum, Kayleigh Steel, 38, added: “Oscar is a lovely, smiley and happy little boy despite his devastating 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, singing, playing with his sister Edie, and Paw Patrol.
“We are always fundraising for Oscar as there is always physio or new equipment to pay for, so every penny counts. We are always extremely grateful when others help with this and would like to thank James for his continued support.”
Oscar and his family are receiving support from Tree of Hope, a children’s charity that helps families raise money for children and young people like Oscar for medical treatment and healthcare services not offered through the NHS and social care. It provides fundraising guidance, campaign development, financial management, charity registration and emotional support.
Tree of Hope CEO Becky Andrew said: “We wish Oscar and his family all the best with their fundraising activities, and best of luck to James with his card sales! We are pleased to give them support in reaching their fundraising goals.”
To donate to Oscar’s fund, 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 find buy a card, contact James via https://www.justgiving.com/fundraising/lion-cards2025