Amanpal Uppal, known to all as Pali, from Leeds, died from a diffuse intrinsic pontine glioma (DIPG) in December 2022 when he was just 37. Following his diagnosis in May 2021, the dad-of-two had an operation, radiotherapy and chemotherapy. His family fundraised thousands of pounds for private treatment from Germany. Despite initially showing positive results, Pali’s condition deteriorated, before he died.
Pali’s sister Nikki tells his story…
Pali was selfless and would do anything for anybody. He was happy and cheery, and his presence would light up the room. He was very funny; he was a brilliant brother.
We lost our mum to bowel cancer when I was 19. Pali gave me so much emotional support and he was always there for me. I don’t think I would have got through university if it wasn’t for him.
“In March 2021, Pali sent me a message to say he had been having headaches. He also said he would become immobile for a few seconds where he was unable to do anything.”
He was a property development manager and led a very busy life, so he didn’t get it checked out. When the headaches continued several months later, we eventually persuaded him to seek help, so he went to A&E at Leeds General Infirmary (LGI) on 10 May 2021.
Pali was told he had normal tension headaches and was sent home. Despite asking, he didn’t have a scan. His symptoms persisted so he went private for a CT scan which showed something on his brain.
“When we were told Pali had a brain tumour, we just didn’t believe it. He was so young so how could this happen to him? Doctors said the tumour was aggressive and inoperable, and Pali would only have 10 to 18 months to live.”
The next day, he had a biopsy and they drained excess fluid from his brain. He was put on steroids which totally changed his cheerful personality. His tumour was a diffuse intrinsic pontine glioma (DIPG).
Pali had 13 rounds of radiotherapy. It reduced the tumour size but was told it would be short-term because it was so aggressive.
Because of the lack of treatment options on the NHS, we researched options all over the world; we were determined to beat it and we didn’t stop. We ended up fundraising £130,000 to cover two years’ worth of a drug called ONC201 from Germany. Research had shown it had good results on people with the same type of tumour.
Pali started taking it in October 2021. In the beginning, it went well, with scans showing a reduction in the tumour. The consultants were shocked. By April 2022, the tumour was stable; he was improving and became more mobile. We started to think he may actually survive this, but an MRI scan in June 2022 showed the tumour had started to grow again. He had chemotherapy in August, but he had to stop after a few doses because it made him so sick.
Pali started having private physiotherapy sessions to improve his mobility but by September he was struggling to get out of the car, and he couldn’t walk properly. His physio didn’t recommend putting Pali through the additional strain, so he stopped.
Around this time, I’d been on holiday for ten days; when I came home, Pali had rapidly deteriorated. His speech was slurred, and he couldn’t swallow properly. He had palliative care at home until he died on 23 December 2022.
I did the skipping for 10 Minutes Every Day in November challenge to raise money for Brain Tumour Research to raise money to help find a cure for the disease.
“I’m so angry the Government gives so little funding to brain tumours; it doesn’t recognise them as a critical priority, it’s ridiculous.”
Before he died, I promised my brother I would do something to try and help others who are fighting this devastating disease, so I’m doing the skipping challenge in his memory.
Nikki Mandviwala
November 2023
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been touched by Pali’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.