A six-year-old boy from Wolverhampton and his family have reached an extraordinary fundraising milestone, raising £1 million in just over two weeks to support specialist treatment for his extremely rare form of motor neurone disease.

Partaap was diagnosed earlier this year with Juvenile ALS, a rare form of the condition. His family say doctors told them that only around 40 to 50 children worldwide had been diagnosed with the condition.

The diagnosis came after Partaap’s health began to change. His symptoms first appeared early last year, when he started falling more frequently and found it increasingly difficult to walk long distances. Over time, everyday activities such as standing and climbing stairs became progressively harder.

For his parents, the diagnosis brought enormous uncertainty. But it also led them to launch an ambitious fundraising campaign to give their son access to specialist treatment in Berkeley, California.

A community comes together

The family’s £1 million target might have seemed almost impossible when the appeal began. Instead, donations poured in from people in their local community and supporters around the world.

Partaap’s mother, Gurbinder, described the response as “phenomenal”, saying the family’s story had resonated with people far beyond Wolverhampton.

The speed of the fundraising has allowed plans for treatment in the United States to move forward. The family has now met the specialist team assembled to explore what might be possible for Partaap.

For his parents, reaching the target is more than simply a financial milestone. It represents an opportunity to pursue treatment that might otherwise have been out of reach.

Looking towards the next chapter

The family now faces the next stage of their journey: travelling to the US and working with specialists on the design and delivery of Partaap’s treatment.

The fundraising campaign has also highlighted the extraordinary challenges faced by families dealing with ultra-rare diseases. When very few children worldwide have the same condition, research, treatment options and specialist expertise can be difficult to access.

Partaap’s story shows how quickly a local appeal can become an international effort when communities rally behind a family in need.

His parents have expressed their gratitude to everyone who contributed, saying they never expected the campaign to reach £1 million.

For a family confronting an extraordinarily rare diagnosis, the money cannot erase the uncertainty ahead. But it has opened the door to a new possibility: the chance to pursue specialist treatment and see what medical science may be able to offer their son.

And after weeks of fundraising, Partaap’s family can now look towards that next chapter with renewed hope.