Akemi's Story

Akemi journey began when she experienced balance and coordination issues in 2020, beginning with short episodes of what was referred to as drop attacks.

We were referred to our local hospital under epilepsy consultation, they did numerous ECG’s but never conclusively found any evidence of epilepsy or brain abnormalities.

Akemis condition and coordination, walking gait became more staggered in 2023, I pushed for an MRI which was done in 2024 - this highlighted a tumour present in Akemis brainstem.

A whirlwind of discussions took place about treatments, surgery, chemotherapy and radiotherapy.

Akemis first line of treatment was given in April of chemotherapy, which wasn’t successful, she had serious adverse effects. Her second line of chemotherapy was also unsuccessful, we became inpatients for the period of May 2024 until discharge in June 2024 that left Akemi with numerous mobility and nutritional issues.

Akemi is currently on no active form of treatment since June 2024, all of her MRI scans are and have been stable.

There is still no agreement on proceeding with an active treatment line, that would improve Akemis condition or quality of life.

She currently attends numerous healthcare services including physio therapy, occupational therapies and St Andrew’s alongside the support of holistic therapies.

Staying at Bens retreat, will give us a much needed break from our daily life and an opportunity to enjoy the time we share together in a more meaningful way.