Luton family's desperate search for treatment after daughter diagnosed with aggressive brain tumour

The parents of a young woman diagnosed with an aggressive brain tumour, are desperately seeking treatment to help prolong their daughter’s life.

Amani Liaquat collapsed at home on her 22nd birthday in April and, faced with limited treatment options on the NHS, is now taking a trial drug sourced from Germany.

Her family, who are from Luton, resorted to crowdfunding to raise the £100,000 they estimate they will need to give their precious daughter the best quality of life for as long as possible.

Amani’s tumour is a grade 4 glioblastoma multiforme (GBM) with H3K27 mutation, cancerous and inoperable. GBM tumours carry a desperately stark prognosis of just 12 – 18 months.

Following a biopsy, Amani began the usual treatment protocol for this tumour type: six weeks of radiotherapy followed by low-dose chemotherapy. But within weeks an MRI scan revealed the tumour had already grown and the chemo was stopped.

Khuram Liaquat, Amani's dad, said: “It was utterly devastating to be advised that Amani’s chemo should be stopped but we were even more determined to fight on.

"Treatment options in the UK for glioblastomas are very limited and, in discussions with her medical team at the National Hospital for Neurology and Neurosurgery in London, we decided the best way forward would be to access a new trial drug, ONC 201.”

The drug has shown promising results in the same tumour mutation as Amani’s in Phase II trials in the US but logistics, the pandemic, and the prohibitive cost of travel insurance made travel to access the trial unfeasible.

Thanks to the generosity of friends, family and the wider community, a crowdfunding page raised £100,000 from 4,000 donors and well-wishers in just 24 hours.

Khuram, who flew out to Germany to collect the drug, said: “Amani will continue to take it for as long as she can tolerate it. I can’t help but think of other families who, like us, are having to somehow find the money to do this.

"We are all under enough stress without having to coordinate fundraising campaigns for life-prolonging drugs.”

Amani and her parents are working with the charity Brain Tumour Research to share their story in order to help raise awareness of the disease which kills more children and adults under the age of 40 than any other cancer.

They are supporting the charity’s petition calling on the Government and larger cancer charities to increase national investment to £35 million a year to give parity of funding with other cancer such as breast, prostate and leukaemia.

Khuram added: “The implications of a brain tumour diagnosis are far more wide reaching than one can imagine.

"Amani was studying for her Masters with a view to pursue her dream of becoming a social worker having graduated with a first-class degree in law.

"Her whole life was turned upside down in a matter of a month. Her studies were halted, her dreams of a fulfilling career shattered, and her fiancé decided he no longer wanted to go ahead with their planned September wedding.

“We have watched our daughter decline physically, neurologically, mentally and emotionally.

"We know through our own research that there are a number of other Phase II drugs, such as Paxalisib and VAL083 which have shown promising results in aggressive glioblastomas.

"Surely patients with such aggressive brain cancers should be able to access these drugs on a compassionate basis at least once standard of care has been completed and shown to be ineffective?

“Very quickly we have had to privately fund the majority of Amani’s lifesaving treatment. It’s hard to describe just how frustrating this is and how desperate our situation has felt at times.”

Brain Tumour Research is the only national charity in the UK singularly focused on finding a cure for brain tumours through campaigning for an increase in the national investment into research to £35 million per year, while fundraising to create a sustainable network of brain tumour research centres in the UK.

For more information about the charity visit: www.braintumourresearch.org.