Race Against Time For Partaap, 6, Youngest Person In UK With MND

For most parents, watching their child learn to walk, run and play football is part of the ordinary rhythm of childhood. For Gurbinder and her family, those milestones have become precious reminders of what is at stake.

Their six-year-old son, Partaap, is believed to be the youngest person in the UK living with an extremely rare form of juvenile motor neurone disease (MND). His family now faces an agonising race against time as they search for potential treatment.

When the warning signs appeared

The first signs emerged early last year.

Partaap began falling for no obvious reason and struggled to walk longer distances. Gradually, everyday activities became more difficult. Standing, climbing stairs and maintaining his balance were no longer straightforward.

After months of appointments, examinations and tests, genetic testing eventually confirmed what his family had feared: Partaap had a rare genetic variant associated with juvenile ALS, a form of MND.

His parents were told that only around 40 to 50 children worldwide had been diagnosed with the condition.

For a family already struggling to understand what was happening to their son, the diagnosis was devastating.

“As parents, hearing this felt like the ground disappeared beneath us,” his mother said.

Refusing to give up

Doctors told the family that there was currently no cure or established treatment for Partaap’s particular condition and advised them to focus on palliative care.

But his parents were not prepared to stop searching for possibilities.

Instead, they began looking into clinical research and emerging therapies for rare genetic diseases.

One area of research involves antisense oligonucleotides, or ASOs. These are medicines being investigated for a number of genetic disorders and can be designed to target specific genetic problems.

The challenge is that developing a therapy for an extremely rare genetic variant is complicated, expensive and time-consuming.

For Partaap’s family, however, time is something they feel they cannot afford to lose.

A child still determined to be a child

Despite the difficulties he now faces, Partaap’s personality has not disappeared behind his diagnosis.

His family says he remains independent, cheerful and determined. He still wants to play football with his younger brother whenever he can.

Today, however, he can only walk for a few minutes before struggling, and he is unable to balance normally.

His parents do not know how rapidly the disease will progress or how much time they have before he loses further abilities.

That uncertainty has made every moment more significant.

The £1m fundraising effort

Partaap’s family is trying to raise £1 million to help fund the design and delivery of a specialist treatment in the United States.

They say a treatment has not previously been developed specifically for his genetic variant, meaning considerable work would be required before it could potentially be used.

The fundraising target is not the family’s only financial burden. They are also dealing with the costs associated with ongoing care, therapies, specialist equipment and adaptations to their home.

His mother, who works as a West Midlands Police inspector, says the family is putting everything it has into the effort but cannot do it alone.

“Speed is everything,” she said.

For the family, the fundraising campaign is about more than a figure on a page. It represents their attempt to create another possibility for their son.

Why rare childhood MND matters

MND is a group of diseases in which motor neurones, the nerve cells responsible for controlling voluntary movement, progressively become damaged. As these cells stop working, muscles can become weaker and movement increasingly difficult.

Childhood forms are particularly rare and can sometimes be associated with genetic changes.

That genetic connection is also an important area of research. Scientists hope that understanding the precise genetic causes of rare diseases could eventually lead to treatments designed around individual mutations.

For families like Partaap’s, research therefore offers something that conventional treatment currently cannot: the possibility of a new approach where few established options exist.

A family’s hope

There is no certainty that the treatment Partaap’s family is pursuing will work. Developing a therapy for a previously untreated genetic variant carries significant scientific challenges.

But his parents say they cannot simply accept that there is nothing more that can be attempted.

They describe their son as someone who makes friends easily, helps others and brings energy into every room.

Above all, they want the opportunity to give him more time.

Partaap’s story is a reminder of the enormous challenges faced by families living with ultra-rare diseases. It is also a glimpse into the rapidly developing world of genetic medicine, where treatments for conditions once considered untreatable are increasingly becoming the focus of scientific research.

For Partaap and his family, the search is now a race against time — one driven by love, hope and the determination to explore every possibility.

This post is based on a BBC News report published on 18 September 2026. Medical treatment and research claims should be understood in the context of the evidence and professional advice available for Partaap’s specific condition.