A female student who collapsed at home on her 22nd birthday has been given just 18 months to live after she was diagnosed with a brain tumour.
Beautiful Amani was rushed to Luton and Dunstable Hospital on April 29, her 22nd birthday, after collapsing at home.
She spent four days there, before being transferred to the National Hospital for Neurology and Neurosurgery at Queen Square, London, for a biopsy.
She spent a further eight days there, during which time she had numerous scans and surgery which left her with 15 staples in her head.
Due to Covid restrictions, she had to deal with not seeing her family and difficult conversations with medical professionals all by herself.
“Two days later, we were given the news that Amani’s tumour was a grade 4 glioblastoma multiforme (GBM) with H3K27 mutation – which was cancerous and inoperable.” Her dad said.
The tumour, a diffuse midline glioma, is resistant to conventional treatment, with its location being so deep in the brain that doctors concluded surgery was not an option.
Following a biopsy, Amani began the usual treatment protocol for this type of tumor which includes six weeks of radiotherapy followed by low-dose chemotherapy, which she was due to begin in August.
But within weeks an MRI scan revealed the tumour had already grown, and the chemotherapy was stopped.
Doctors then told her she has between 12 to 18 months to live.
Her heartbroken family, from Luton, Bedfordshire, UK, have been battling to raise funds for treatment. They have now spoken of the diagnosis saying it has been “the most gruelling time any of us have ever experienced”.
Her dad, Khuram Liaquat, jetted out to Germany in the midst of the pandemic to collect three months’ worth of an expensive drug that could prolong his daughter’s life.
The drug, known as ONC201, has shown promising results in the treatment of Amani’s disease but it costs £4,000 a month and, if effective, will require long-term use.
According to the dad, the cost for a year’s medication, plus medical consultations is almost £50,000 – more than what Amani’s family can afford.
Her parents set up a JustGiving page to help them fund the life-prolonging treatment for their daughter.
And, to the surprise of her family, the page has raised £100,000 in just 24 hours.
Khuram 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.
“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, ONC201.”
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.
“Helpless and heartbroken, 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.”
“We have set up an Instagram page, @Fight4Amani, for anyone who is interested in following our journey.”
Khuram, who flew out to Germany to collect an initial three months’ worth of the drug, said: “We will always be forever grateful to everyone who donated and supported our campaign.
“Amani will continue to take it for as long as she can tolerate it.
“But 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’s parents are now 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.
By Francisca C.