Schoolboy told he's one of five in the UK after waiting six years for diagnosis
A schoolboy with an extremely rare disease is excited after receiving a ‘huge’ gift. Joshua Duckworth, nine, will be the honorary 35th runner in this year’s Grand National at Aintree on Saturday, April 5.
The Jockey Club, who own the famous racecourse, first created the honorary runner berth for the Randox Grand National in April 2017 for five-year-old Neuroblastoma campaigner Bradley Lowery, who sadly died three months later.
Joshua is from a family that is passionate about racing. He loves meeting racing personalities and over the past year he has met the Grand National-winning jockeys Sir AP McCoy, Ruby Walsh and Rachael Blackmore.
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In November 2023, Joshua was diagnosed with 4H Leukodystrophy (POL3B-related hypomyelinating leukodystrophy), a white brain matter disease which affects many aspects of his daily life, such as movement and communication, as well as hearing and visual impairment. 4H Leukodystrophy is an extremely rare neurological condition, with only around 200 confirmed cases worldwide and just four to five confirmed cases in the UK.
Joshua, who is also from Aintree and a massive Liverpool FC fan, is under the care of Alder Hey’s neurology team and receives regular monitoring and care to help alleviate discomfort. Joshua was first treated at Alder Hey after being referred from Whiston Hospital when he was just two years old.
His dad Christopher said: “It can be incredibly frustrating for Joshua when he is unable to do things that other children his age do. The condition affects everything that he does day-to-day. It took six years to get his diagnosis due to the condition being so rare, but it is positive to be taking a big step forward.”
The team at Aintree Racecourse first met Joshua and his family at The Grand Community Lunch in 2024, where he attended through his involvement with Bootle Bucks FC. Joshua and his family were then invited to enjoy racing at the Grand National Festival in 2024 and the relationship grew.
Speaking about his son being invited to Aintree, Christopher added: “It’s a huge honour for Josh to be this year’s 35th runner in a race like the Randox Grand National. The opportunities Aintree has given to Josh and us as a family have been amazing and we’re so excited for the next few months in the build up to the big day.”
Dickon White, the regional director for the north west and Aintree at The Jockey Club, said: “We are delighted to welcome Joshua as our 35th runner for the 2025 Randox Grand National. It makes it very special that he hails from Aintree and is such a massive racing fan.
“The honorary runner position has played a huge role in highlighting the brave battles of some truly extraordinary youngsters and the amazing work of Alder Hey Children’s Hospital and charity, which Aintree Racecourse has now been partnered with for 23 years.”
Mandy Jones, the philanthropy manager at Alder Hey Children's Charity said: "We’re incredibly grateful to The Jockey Club for their unwavering support over more than two decades. Their generosity has made a real difference to the lives of so many children and families at Alder Hey, and it’s heart-warming to see their commitment continue year after year.
"This partnership means so much to us, and we’re thrilled to be celebrating another Grand National with their support. Thank you for everything you do to help us make a difference!"