A woman in Bedfordshire has started crowdfunding in a desperate bid to get her ailing husband, who has been diagnosed with a brain tumour, treated abroad.
The case of Mohsin Mughal, a father of three from Luton, was later found to be an inoperable grade 4 glioblastoma (GBM). The tumour was diagnosed on 15th anniversary of his marriage with Rohima Mughal in May.
Mohsin, who worked as a specialist biomedical engineer, had been suffering with pains in his shoulder and foot, loss of hearing, muddled words, and confusion.
The 42-year-old has since had radiotherapy and chemotherapy but the suffering from fatigue, debilitating pains and confusion has not subsided. The plan now is to go to Germany for life-prolonging treatment but since it is prohibitively expensive, Mohsin’s family has no other option but to crowdfund.
Rohima, who works with the charity Brain Tumour Research to highlight the situation that her family is in, said, “I’d already been searching the world far and wide for different treatments after finding out his tumour was wildtype and unmethylated, so less likely to respond effectively to chemo drugs, but now we know it hasn’t worked, this is more urgent than ever.
“There are some good treatment options in the US, but we are not able to get insurance to take Mohsin there. However, I’ve found IOZK Immunotherapy and CeGat in Germany, which are extremely expensive and would need to be started soon.
“IOZK offers a personalised therapy, which aims to mobilise the body’s own immune response, so that it can fight against the growth of the tumour. It costs an estimated £100,000 – £116,000 and can start around four weeks after the end of chemo, so we’re looking to get Mohsin there for the first week of October.”
She added that the family has been told that her husband is a good candidate at the moment since his mobility is not too affected but some people wrongly assume that he is not as sick. She said time is key because if his mobility and symptoms worsen, the treatment may not be accessible any longer. “So we cannot wait,” she said.
“CeGat uses genetic tumour diagnostics to tailor individual treatments and costs around £60,000. Researching everything has been a bit of a minefield, but we have paid for private consultants to get impartial opinions about the best course of action and hope these options will allow Mohsin more time to watch his children grow up,” Rohima said.
The stress has taken a toll on her as well as she has lost a lot of weight and sleep.
“I live in a world of doubt and constant uncertainty now, always wondering if I’m doing the right thing and not wanting to fail Mohsin or our children,” she said.
Thanking all those who have donated for their cause, she said it has given the family the hope and strength to keep the fight going. She added that it was overwhelming to think so many loved ones and strangers would come forward to help her family.
“We’re humbled by everyone’s generosity but the reality is that the costs of private treatment are astronomical and we still have a long way to go to be able to afford it,” she added.
Charlie Allsebrook, community development manager for Brain Tumour Research, said, “Brain tumours kill more children and adults under the age of 40 than any other cancer, yet, historically, just one per cent of the national spend on cancer research has been allocated to this devastating disease.
“This historic lack of investment in research has resulted in very limited treatment options for brain tumour patients here in the UK. This leaves families like Mohsin’s feeling they have no option but to fund expensive treatments abroad, adding to their stress and anxiety at what is likely already the most difficult time in their lives. This is an outrageous situation and our hearts go out to them.”