Shona Floyd on her daughter Tasha’s brain donation to further help research into DIPG

Thursday 5 May 2016

Tasha Floyd, one of our first Young Ambassadors, who died at the end of 2015 at the age of 24, donated her brain to medical research.

Early in 2015, she took a lead role in launching our five year strategy, Defeating Brain Tumours.

“Tasha was a remarkable young woman who when faced with an impossible task, always found a way to make it possible. The following words are her own;

“When I was diagnosed with a brain tumour at the age of 16, I was given no hope. The doctors told my parents I would live for a year, at most. January 2015, a scan showed that the tumour was back. I was told for the second time to fear the worst. But I'm not ready to give up. I will never accept there is no hope. That's why I'm so passionate about supporting The Brain Tumour Charity and its goals – to double survival and to halve the harm caused by brain tumours. The charity is offering something precious to everyone affected by a brain tumour: hope."

Sadly Tasha lost her eight year battle on 1 December 2015 but right to the end she was smiling and fighting to survive.

On 3 December 2015 her last gift was to donate her brain to further help research into Diffuse Intrinsic Pontine Gliomas. Survival rate for these brain stem Gliomas is 9-12 months and there are less than 0.25% of survivors worldwide who survive to five years.

Graham & I met with Professor Chris Jones at the Institute of Cancer Research who informed us how Tasha's selfless donation would add to the knowledge already gained from the brains & tumours which were previously donated. Worldwide this is approximately 30.....30 brains or sections of tumours in the whole world is simply not enough to move research forward.

As parents we know the difficulties in imagining the process of brain donation; we understand the dilemma of someone carrying out the process on your child; we recognise the difficulty of making this decision and seeing it through. We met the neuro-pathologist who carried out Tasha's donation and heard from him how emotionally difficult he found working on Tasha, as she was around 60 years younger than the donors he normally works with. We were surprised at how few brains are donated to the national brain banks to assist researchers such as Dr Chris Jones find that elusive cure.

However, as parents who watched our child slip away from us, holding her in our arms as she took her last breath, kissing her goodbye as she physically left us forever, we know the sense of pain and loss that no parent/wife/partner/child or sibling should ever have to feel due to lack of research and a much needed cure.

We are passionate about raising awareness of whole brain donation. It is this lack of researchable material which is holding back research and ultimately a cure for brain tumours. All we ask is, if you are reading this and are considering donation but are still unsure remember your own journey and imagine an army marching in your shadow waiting for a cure.

Tasha was a young woman whose humour and zest for life shone through regardless of her own personal difficulties. But she had one desire to see others survive and live life."

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