Parents mark £10,000 fundraising milestone after loss of son, Khushil, to a brain tumour

Losing their son Khushil, aged just 14, to a rare brain tumour inspired his parents to raise funds for research into the disease. 

The first sign something could be wrong came when Khushil suddenly developed a squint in his left eye. Namrata and Bhavesh just thought he might need glasses. But their world was turned upside down when, in March 2015, he was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG), a rare condition that affects up to 30 children in the UK each year. 

There is no cure, and Khushil’s family was devastated to be told that he had six to nine months to live. 

The couple, who tried their best to keep life as normal as possible for Khushil, vowed to make the most of the time he had left, and drew up a wish list of things he wanted to do. Khushil continued to attend his school, Claremont High School in Harrow, insisting that his medical appointments were scheduled outside of school hours. He even completed his Duke of Edinburgh expedition in June 2017 – achieving his Bronze award, despite being in a wheelchair by then. He died in his parents’ arms, at home, in September that year.

The couple set up the Khushil Pandya Fund with The Brain Tumour Charity, to raise money for research into DIPG. Five years after their son’s death, they can now celebrate raising over £10,000, but vow to keep on raising funds and awareness – to help other families facing a DIPG diagnosis.

Namrata said: “When Khushil was diagnosed with DIPG, it was the most devastating time in our lives. It was the biggest shock. Bhavesh and I could not believe that just a squint in an eye could be so deadly. 

“It was extremely difficult to stay positive when you know that any minute could be the last moment of your child’s life. But it was Khushil himself who helped us through it. He taught us how to live without holding onto resentment or fear. He taught us how to believe in ourselves and how to make the most of our lives.

“Khushil did not see his illness as something that would stop him, just another life hurdle that could be overcome – as always with dignity and tenacity.

“His way of accepting whatever life threw at him helped us get through the most difficult period we have ever experienced.

“When Khushil was diagnosed, we did not know anything about DIPG – which is why we are  trying so hard to raise awareness and funds for research. 

“Raising £10,000 means a lot to us – because it feels like a milestone that we have achieved through Khushil’s inspiration. Khushil means happiness. We hope that raising funds in his name means that could bring happiness to other parents – and that there will be some progress in research into DIPG, and hopefully a cure one day.” 

Now the couple are making a documentary on Khushil’s life in a bid to raise awareness of DIPG. 

Namrata said: “We must come together, to prevent others from losing their children and going through the unimaginable pain that Bhavesh and I have suffered.

“As parents, we want a change in the world of DIPG and to get more research done in terms of treatment and medication.

“The only way to stop parents losing their cheeky little ones is raise funds for research which would make difference and also give some hope to parents. Everyone is helping us raise funds for The Brain Tumour Charity including friends, family, Khushil’s school and from our work place.

“Bhavesh and I will never be ready to accept that in this day and age, where science has progressed in so many areas, we have this particular tumour, and very little knowledge on how and why it happens. There is no effective treatment or medication to help.  And this hasn’t changed for over 40 years.”

Firzana Khan, Community Fundraiser for the South region, said: “We are touched by the hard work of Khushil’s family in reaching this fundraising milestone and thank them sincerely for all their support.

“Brain tumours are the biggest cancer killer of the under 40s and, unlike other cancers, survival rates have not improved over the last 40 years.

“We are leading the way in changing this and truly fighting brain tumours on all fronts through our work.

“It’s through the efforts of people like Namrata and Bhavesh that we can change these shocking statistics in the future and bring hope to the thousands of people who are diagnosed with a brain tumour every year.”

The Brain Tumour Charity is the UK’s largest dedicated brain tumour charity, committed to fighting brain tumours on all fronts. 

We fund pioneering research to increase survival and improve treatment options as well as raising awareness of the symptoms and effects of brain tumours to bring about earlier diagnosis. We also provide support for everyone affected so that they can live as full a life as possible, with the best quality of life.