Fight for six year old’s life after MND diagnosis

Doctors told them there was no cure or treatment for his condition and advised them to focus on palliative care.

“Through it all, he was courageous, patient and unbelievably strong,” Gurbinder, from Wolverhampton, said.

“We simply couldn’t accept that. Not for our child. Not without trying everything.

“That’s when we turned to clinical research where new therapies come to light.”

Today, Partaap struggles to walk for more than a few minutes and is unable to balance, but his family say he remains fiercely independent and still insists on playing football with his younger brother whenever he can.

“No one knows how quickly it will progress in him, or how much time we have left,” Gurbinder said.

According to the MND Association, childhood MND is rare, but as in adults the messages from motor neurones gradually stop reaching the muscles that control movement.

The charity said childhood forms of the disease are often linked to changes in genes, meaning it may be possible to develop treatments targeting the faulty gene.

One approach being researched involves medicines known as antisense oligonucleotides (ASOs), which scientists are developing for a range of rare genetic conditions.

In a bid to prolong their son’s life, Partaap’s family are now attempting to raise £1m to help design and deliver specialist treatment in the United States, which they say has not previously been developed for his specific gene variant.