(Asian independent) A desperate family in a race against time to save a young father from a terminal illness has raised tens of thousands of pounds in just a few days to help fund life-extending treatment.
When civil engineer Aman Sumal, of Ruislip in West London, was diagnosed with a grade 4 glioblastoma multiforme (GBM) at the start of this year, his son, Rajan, was less than a year old.
With his condition fast deteriorating and no more treatment options available on the NHS, his oncologist from Charing Cross Hospital, in London, has recommended starting a combination of two experimental drugs, both of which will need to be privately funded.
In a desperate attempt to raise the cash needed, this week Aman’s family launched a fundraising page on crowdfunding site GoFundMe, with more than £75,000 donated in the first 24 hours alone and the current total exceeding £153,000.
Aman’s cousin, Tony Sumal, of Langley near Slough, in Berkshire, said: “People’s generosity has been off the scale. To say we’re overwhelmed doesn’t even come close. We just want to do anything we can to give Aman as much time as possible.”
He added: “It’s a really scary situation. Watching him deteriorate is so difficult. There are no words to express the pain we’re feeling, it’s immeasurable; like a conveyor belt of pain, it doesn’t stop and you know it’s going to get worse.”
Aman’s symptoms started in August 2020 when he had a seizure and began suffering headaches, but he was given anti-seizure medication and referred for three-monthly scans for what was initially thought to be a low-grade brain tumour.
The 36-year-old suffered another seizure in January and was scheduled for brain surgery after an MRI showed areas of concern. COVID-19 restrictions prevented his wife, Jasdip, from being able to join him in the hospital, forcing Aman to undergo surgery alone. A biopsy of his tumour revealed the severity of his disease with Aman given a prognosis of 12 to 14 months and put on a course of chemotherapy and intensive radiotherapy.
His family continued to search for alternative treatments and privately-funded a protocol by a naturopath in Australia, which included a programme of natural supplements and repurposed drugs. It also sent a sample of his tumour to CeGaT, a gene analysis company in Germany, for DNA sequencing to find out if targeted medication or a personalised vaccine could help.
It is hoped the money being raised this week will enable Aman to start taking intravenous peptide vaccines from CeGaT, which have been specifically formulated for him, and pay for private immunotherapy treatment.
Anoop Sumal, Aman’s identical twin brother who is staying by his side in hospital, described Aman as an ‘intelligent, fun-loving and caring brother who is now fighting for his life’ and said he was ‘overwhelmed and humbled by the love and support’ people had shown for him.
He said: “We have been given the heart-breaking news that time is no longer on our side. We need help. We love Aman very much and want to do all we can to give him the precious time he needs and deserves. The money raised will give him 10 months of treatments but we urge people to continue to donate and fundraise to help us ensure Aman continues to have access to the best treatments available. Any donation, however big or small, will be greatly appreciated so we can allow him to keep making memories with his family.”
Brain tumours 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.
Hugh Adams, head of stakeholder relations for Brain Tumour Research, said: “Our hearts go out to Aman and his family as they continue to do all they can to try to prolong his life. Aman’s story highlights the plight of desperate cancer patients, who turn to crowdfunding treatment when no further options are available on the NHS. Crowdfunding is filling an unmet need and the medical establishment is letting brain tumour patients down. Brain Tumour Research is striving for a reality where all suitable patients are able to be included in official clinical trials and that’s why we continue to campaign for increased national investment into this underfunded area of cancer research.”
“Pioneering research at our Centre of Excellence at Queen Mary University of London (QMUL) is focused on using GBM stem cells to help develop unique, patient-specific treatments. This project is set to be of global significance in the race to find a cure. We also fund BRAIN UK at Southampton University, the country’s only national tissue bank registry providing crucial access to brain tumour samples for researchers and an essential component in the fight to find a cure for GBM.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.
To help Aman’s family raise the funds it needs, visit www.gofundme.com and search for Anoop Sumal.
To find out more about what you can do to help fund vital research into brain tumours, visit www.braintumourresearch.org.
