Family hit £1m target for son with ultra-rare MND

A little boy dressed in a yellow t shirt and a yellow turban smiling, stood outside in front of lots of greenery

A family have raised £1m for specialist treatment for their six-year-old son, who is believed to be the youngest person in the UK living with an extremely rare form of Juvenile ALS.

Partaap's parents launched the appeal after he was diagnosed with a rare variant of the condition, a form of motor neurone disease, earlier this year.

The family said they reached their £1m target in just over two weeks, with donations coming from their local community and supporters around the world.

Partaap's mother, Gurbinder, described the response as "phenomenal".

"It's quite overwhelming," she said. "Partaap's story has resonated with a lot of people.

"We're so grateful and really appreciate everyone."

A mum, dad and son dressed in traditional Sikh clothing posing for a family photo

The family, who are from Wolverhampton, said the money would go towards the design and delivery of specialist treatment in Berkeley, California.

Partaap's symptoms first appeared early last year when he began falling over and found it increasingly difficult to walk long distances.

As his condition progressed, he struggled to stand, climb stairs and carry out other everyday activities before doctors confirmed the diagnosis in January.

The family were told only 40 to 50 children worldwide had been diagnosed with the condition.

A young boy wearing a turban sat in a hospital chair with wires and blood pressure monitor on him

Gurbinder said reaching the fundraising target had enabled plans for treatment in the US to move forward.

"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. We don't think we'd ever say enough thank yous to everyone. People are still supporting us now."

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Original source Family hit £1m target for son with ultra-rare MND

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