"Her whole life was turned upside down"
A student who collapsed at home on her 22nd birthday has been given 18 months to live after being diagnosed with a brain tumour.
Amani Liaquat, a Masters student, received the news in April 2020.
She was diagnosed with an aggressive and inoperable brain tumour and doctors told her she has between 12 and 18 months.
Her family said it has been “the most gruelling time any of us have ever experienced”.
The family, from Luton, have since been raising funds for treatment.
Her father, Khuram Liquat, flew to Germany 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 same tumour mutation as Amani’s in Phase II trials in the US.
However, it costs £4,000 a month and, if effective, will require long-term use.
This medication, as well as medical consultations, costs approximately £50,000 per year.
As a result, the student’s parents set up a JustGiving page to help them raise funds. Within 24 hours, the page raised £100,000.
On April 29, 2020, Amani was taken to Luton and Dunstable Hospital 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 exploratory surgery which left her with 15 staples in her head.
Due to Covid-19 restrictions, she went through the experience by herself.
Khuram said: “Amani coped amazingly well and was finally discharged on 10 May.
“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.”
The tumour is particularly resistant to conventional treatment. As its location is so deep in the brain, doctors said surgery was not an option.
Following a biopsy, the student began six weeks of radiotherapy followed by low-dose chemotherapy, which she was due to begin in August.
However, an MRI scan showed the tumour had grown in just a few weeks and the chemotherapy was halted.
Khuram explained: “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.”
Now, the family is supporting a petition by Brain Tumour Research, calling on the Government and larger cancer charities to increase national investment.
Khuram said: “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 said that he and his family will be “forever grateful” to those who donated.
However, he went on to say that are other families who are experiencing the same thing.
The Daily Star reported that Amani’s parents are working with the charity Brain Tumour Research to share their story, in order to help raise awareness of the disease.