A Leeds dad who had been suffering from headaches for over a month eventually found out he had a rare brain tumour.
Amanpal Uppal, known as Pali, was told he had a highly aggressive cancerous tumour earlier this year after previously being diagnosed with tension headaches.
The tumour is particularly resistant to conventional treatment, leaving Pali's family desperately seeking alternatives.
They are now hoping to raise money for an expensive trial drug and immunotherapy in Germany that may be able to help Pali, 35.
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Kiren Sirha, Pali's older sister, said: "Pali is our world, he is the rock of our family as a father, husband, son, brother and dear friend to so many. He has a heart of gold and never fails to put others before himself, he is our inspiration every day, we are so proud of him.
"The past few months have been very distressing for Pali’s family and friends. It has become challenging for us to see our beloved Pali endure weeks of radiotherapy and the side effects that have followed.
She told LeedsLive: "It's been a hard journey for the last few months. It's devastating. He's 35 and he has a young family. He's my younger brother, but we're all young - it's been a big shock."
Pali, dad to Millie, 3, and Mia, 1, started experiencing short headaches in April of this year.
After going to his GP on May 10, he was referred to the Leeds General Infirmary (LGI) for blood tests and a CT scan.
However, upon his visit he was diagnosed with tension headaches, without receiving a scan or blood tests.
His family, including Kiren and Pali's wife Jas, were worried, and urged him to seek a private scan as he had never suffered any health problems before.
He had a private scan at Bingley Hospital on May 27, where a mass was located on the back of his brain.
After that, Pali, who lives in Bramley, was rushed back to the LGI for surgery to drain the fluid on his brain and complete a biopsy.
He spent days alone in the hospital enduring scans and surgery before being released home to his family.
The next week, he was told he had a brain tumour - specifically later labelled as a stage 4 Diffuse Midline Glioma.
This type of tumour is more common in children than adults, and Pali and his family were told it was aggressive, and presently inoperable.
At the end of June, Pali began three weeks of advanced radiotherapy.
Kiren, who lives in Alwoodley, said: "Those 3 weeks were the most gruelling any of us have ever experienced and the effects of radiotherapy have hit Pali hard."
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Upon research and conferring with oncologists, Pali and family were told trial drug ONC201 could be the most effective treatment for his specific tumour as well as an immunotherapy treatment in Germany.
However, Kiren said they were told ONC201 could not be funded by the NHS.
Instead, Pali's family, many of whom were born and raised in Pudsey, Leeds, are trying to raise the funds for the treatment themselves.
ONC201 costs £5,000 a month, and must be used long-term if it is effective. Immunotherapy in Germany could cost around £60,000 per treatment. The family is therefore hoping to raise £120,000 for Pali.
The GoFundMe page for Pali's treatment can be found here.
As of Friday October 8, £45,000 had already been raised towards Pali's target.
Kiren told LeedsLive: ""We'll do anything we can for him. We're going to get him the treatment no matter what. But there's so many people out there who won't be able to do this.
"It's a heart-breaking and emotional journey, but we're doing anything and everything we can."
Dr Phil Wood, Chief Medical Officer and Deputy Chief Executive at Leeds Teaching Hospitals NHS Trust, said: “We are sorry to hear about Mr Uppal’s experience.
"We always strive to deliver the highest quality care and to find ways to improve our services through patient feedback. If Mr Uppal and his family would like to contact our Patient Advice and Liaison Service we can work with them to address their concerns.”
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