Amani’s Story

"Amani graduated with a 1st class Law degree in July 19 and began a Masters in Social Work. Life was good! Then, on her 22nd birthday in April 20 she collapsed at home with her first seizure, & was rushed to hospital.

Shockingly, scans revealed an inoperable Glioblastoma tumour with a limited prognosis. Standard-of-care treatments in the UK could not stop her tumour growth. We 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 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.

Despite it all, Amani campaigned tirelessly to raise awareness about brain cancer and the lack of Government funding for its research via her Fight4Amani Instagram page and Chat2Amani podcasts. She was even filmed for a documentary where she got to record a 40-minute interview with Tom Parker from the boy band The Wanted. Amani's story so touched many people that they began fundraising. With our family's annual Walk of Hope in our hometown, we have raised over £100,000 towards research into GBM.

Amani's condition sadly began to deteriorate in Sept 21 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.

In Nov 21 Amani was given the devastating news that her tumour had progressed extensively throughout her brain & was now also 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. We have continued campaigning in Amani's memory and are committed to helping raise awareness wherever we can.'