Appeal for Partaap surpasses £1 million target
12 October 2026
An appeal set up to raise £1 million to help save the life of the six-year-old son of West Midlands Police Inspector Gurbinder Kaur reached its target within weeks of being launched.
And Gurbinder has expressed her gratitude to everyone who has donated and for the ‘phenomenal response’ to the family’s appeal.
She said: “It was unbelievable that so many people were donating from all across the world. We thought it would be almost impossible to raise £1 million and, at the very least, that it would take months.
“It was amazing, the response has been phenomenal. I think a lot of people had been watching the gofundme total as we had so many messages that night as it hit £1 million, which was amazing because it showed how much people cared and had willed for it to reach the target as soon as possible.
“We don’t think there are enough words to express how grateful we are for everyone’s support whether that was through donating, sharing, fundraising or prayers - it all helped us reach that total.”
Rare
Gurbinder’s son, Partaap, was diagnosed with an extremely rare, terminal, neurodegenerative disease in January this year prompting his family to set up a Go Fund Me page in the hope of funding pioneering treatment.
Gurbinder explains: “Partaap is a brave, bright, confident six-year-old who lights up every room he walks into. He makes friends effortlessly with his sunny nature and beautiful smile, and he is always the first to help anyone who needs it. He is the most wonderful big brother to his brother, and is always looking out for him.
“Early last year, we noticed small things that didn’t feel right. He began struggling to walk long distances, to stand up from sitting, and to climb stairs. He fell often, for no clear reason. What followed were months of hospital visits, tests, and endless worry. Through it all, Partaap was courageous, patient, and unbelievably strong.
“In January, our world shattered. His genetic tests came back, and we were told he has Juvenile ALS (amyotrophic lateral sclerosis), also known as MND (motor neuron disease). The gene variant causing his illness, SPTLC2, is so rare that only 40 – 50 children worldwide are believed to have it. No one knows how quickly it will progress in him, or how much time we have left. As parents, hearing this felt like the ground disappeared beneath us.”
There is no cure for ALS. It destroys motor neurons in the brain and spinal cord, slowly taking away the ability to walk, move, speak, swallow and eventually breathe. In adults, ALS is usually diagnosed around age 55+ and, even then, most survive only two to five years. In children, it is so rare that very little is known and there are no clinical trials for Partaap’s gene variant.
Independent
Partaap currently struggles to walk more than a few minutes, to climb stairs, to balance and to stand up from sitting. He falls often and his limbs are weak. But he is still fiercely independent insisting on walking when he can, and playing football and tag with his brother.
Gurbinder says: “We refuse to give up. When doctors told us there was no cure, no treatment, and that we should focus on palliative care, 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.
“One of the most promising approaches for rare genetic diseases is antisense oligonucleotides (ASOs), targeted treatments that can reduce harmful proteins or ‘switch off’ faulty gene messages. In Partaap’s case, his gene variant causes an overproduction of sphingolipids, which is driving the disease.
“An ASO for SPTLC2 related ALS has never been attempted before. But we are assembling a team to try to create a bespoke ASO for Partaap that could slow or even stop the progression of this devastating disease.”
The family are working with Jeff Milton, a scientist and biotechnology entrepreneur who has dedicated his career to making precision medicines accessible for people with rare neurodegenerative diseases.
“Jeff is helping us build a team for Partaap, but speed is everything. Every month that passes, we risk losing more of our son’s abilities,” Gurbinder adds, “Because this disease is so rare, no one knows how aggressive it will be. To move quickly, we needed to raise around £1 million to cover the costs of designing, developing and delivering a potential ASO treatment - something that has never been done before for this gene.”
Long-term
Even if successful, ASOs are not a one-time cure. They must be administered repeatedly every few months, meaning long-term financial challenges.
On top of this, the family are facing ongoing care costs: therapies, specialised equipment, home adaptations, travel and everything needed to keep Partaap safe, comfortable, and able to enjoy his childhood.
The fundraising appeal currently stands at £1,055,000 but has been paused. It will be opened up on the days of fundraising events, which communities still want to hold. All the extra money will go towards the longer-term care costs, as well as travel, house adaptions and anything Partaap needs to make him safe and comfortable in and outside the home.
Gurbinder concludes: “The team of scientists has been assembled and they are based at the Violet Research Institute in Berkeley, California. They are now awaiting Partaap’s cells from his skin biopsy to be sent over to them from London for them to start work and they are looking forward to meeting Partaap himself. It’s just the start of Partaap’s journey.”
