AN ASHTON-UNDER-LYNE woman whose late brother died after being diagnosed with a brain tumour has spoken of her ‘anger’ at the lack of Government funding into the condition.
Now Nikki Mandviwala has taken it upon herself to raise money by skipping for 10 minutes every day in November in aid of the Brain Tumour Research charity.
Amanpal Uppal – known as Pali, 37 – was diagnosed with a diffuse intrinsic pontine glioma (DIPG) in May 2021.
He had an operation, radiotherapy and chemotherapy on the NHS, but the ‘lack of treatment options’ led the family to raise thousands for private treatment from Germany.
Despite this, father-of-two Pali died in December 2022.
Now his sister, 35, has taken on her challenge for the cause to help find a cure for the disease.
She said: “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.
“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 raising £130,000 to cover two years’ worth of a drug from Germany.
“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.”
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just one per cent of the national spend on cancer research has been allocated to the condition since records began in 2002.
In March 2021, Pali – who lived in the Pudsey area of Leeds – started suffering from strong headaches.
He also had moments where he would ‘just freeze and would be unable to do anything for a few seconds.’
After being persuaded to get someone to check him, he went to A&E on 10 May.
Nikki added: “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.
“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.”
Pali had 13 rounds of radiotherapy. It reduced the tumour size but was told it would be short-term because it was so aggressive.
Nikki and her family fundraised £130,000 to cover 2 years’ supply of ONC201, a drug not available on the NHS, but privately in Germany.
She continued: “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’s condition deteriorated rapidly. He died at home on December 23, 2022.
Matthew Price, community development manager at Brain Tumour Research said: “We’re really grateful to Nikki for taking on the Skip for 10 Minutes Every Day in November challenge as it’s only with the support of people like her that we’re able to progress our research into brain tumours and improve the outcome for patients like Pali who are forced to fight this awful disease.”
YOU can donate to Nikki’s fundraising page by clicking facebook.com/donate/651217433821684/651217437155017/