A Wolverhampton family has raised £1m in just over two weeks to fund specialist treatment in Berkeley, California, for their six-year-old son Partaap, who was diagnosed earlier this year with a rare variant of Juvenile ALS. His symptoms began last year with increasing mobility problems, and doctors confirmed the diagnosis in January. Medical advisers say only about 40–50 children worldwide have this variant. Reaching the fundraising goal has allowed the family to meet the specialist team and begin planning the US treatment programme.
Wolverhampton Family Raises £1m In Two Weeks To Fund Son’s Specialist Juvenile ALS Treatment
Partaap is believed to be the youngest person in the UK living with the rare condition [Family]
A family from Wolverhampton has raised £1m in just over two weeks to fund specialist treatment for their six-year-old son, Partaap, who is believed to be the youngest person in the UK living with an extremely rare form of Juvenile ALS (a variant of motor neurone disease).
Partaap was diagnosed with Juvenile ALS earlier this year, at six years old [Family]
Partaap's parents launched the appeal after he was diagnosed earlier this year. His symptoms first appeared in early 2025 when he began falling more frequently and found it increasingly difficult to walk long distances. Over time he struggled to stand, climb stairs and complete everyday tasks, and doctors confirmed the diagnosis in January.
The family will now use the money to travel to America to carry out specialist treatment [Family]
The family say the funds will pay for the design and delivery of a specialist treatment programme in Berkeley, California. Medical advice shared with the family indicates that only about 40–50 children worldwide have been diagnosed with this particular variant.
"It's quite overwhelming," said Partaap's mother, Gurbinder. "Partaap's story has resonated with a lot of people. We're so grateful and really appreciate everyone."
Reaching the £1m target has allowed the family to move forward with plans for the US programme. Gurbinder said the fundraising success made it possible to meet the specialist team assembled to explore scientific and clinical options for Partaap.
"This week we were finally able to meet the team who's been assembled," she said. "Everyone's excited to see what we could maybe do with the science for Partaap now. We never thought we'd be able to get to a million."
The family are arranging travel to California and say work will now focus on finalising the treatment plan and logistics. They thanked their local community and supporters around the world for the rapid and "phenomenal" response that made the next steps possible.
Help us improve.
