Story
Amani graduated with a First Class Law degree in July 2019 and then began a Masters in Social Work. Life was good! Then, on her 22nd birthday in April 2020 she collapsed at home with her first seizure and was rushed to hospital.
Shockingly, scans revealed an inoperable Glioblastoma tumour with limited prognosis. Standard of care treatments in the UK was unable to stop the growth of her tumour. She had no other option but to purchase a trial drug from Germany called ONC201. Thankfully, this drug worked for one year and bought Amani some precious, extra time with her family.
But throughout, Amani had to deal with many other health issues: a change of appearance due to steroids, osteoporosis and a deterioration of her eyesight due to double vision and the loss of her peripheral vision.
Amani's condition sadly began to deteriorate in September 2021 due to a blockage in her brain that was causing a dangerous build-up of CSF. Repeated shunt surgeries were carried out in an attempt to drain the fluid.
But by November 2021 we were given the devastating news that Amani's tumour had progressed extensively & was now in her spine. The decision was made that no further treatment would benefit Amani. She deteriorated over the coming months and passed away at home on 21st Feb 22.
Throughout her illness Amani campaigned tirelessly to raise awareness about brain cancer and the lack of Government funding into its research via her Fight4Amani Instagram page and her Chat2Amani podcasts. She even recorded a 40 minute interview with Tom Parker from the boy band The Wanted.
Many people were so touched by Amani's story they felt compelled to do something to help. Many people kindly fundraised in Amani's name to fund research at laboratories set up by the charity, Brain Tumour Research. As a family we set up this Fight4Hope Fundraising Group and we organise annual Walk of Hope events. To date we have raised over £110,000 towards research into GBM.
Please watch Amani's speech that she gave at our first ever Walk of Hope in which she describes the impact that the lack of funding has on patients. She questioned: 'Does my life not matter?' https://youtu.be/iuRodMsmK-I
Brain cancer is the biggest killer of children and adults under 40 yet receives historically only 1% of the national spend on cancer research, so more needs to be done. As her parents we continue to campaign in Amani's memory. Please help by donating as much as you can. Thank you.