My story:

In the summer of 2016 my mum Sandra (ages 63) was submitted to Harrogate Hospital. She couldn’t walk properly, was very confused with speech problems, hallucinations, muscle spasms and could not look after herself.

She spent around 6 weeks in Harrogate Hospital. The doctors didn’t know what was wrong with her. Her symptoms had begun around 18 months previous. They did a brain MRI, took an ECG, took blood samples and spinal fluid samples to try to give us a diagnosis and prognosis. One of the doctors mentioned CJD (he had come across it previously, although it was very rare). With that we had specialists from Edinburgh (National Prion Centre) and London (UCLH) visit mum on numerous occasions, reviewing her clinical signs and interviewing me and my brother about her life. It was awful. It felt as though I was watching an episode of House - but I was in it.

A few days after her 63rd birthday (8th August 2016) she was transferred to a nursing home in Ripon. She needed full care. By this time she was hallucinating most of the time, verbally making no sense, having seizures and had been bed bound since she was first submitted to hospital.

By then, the specialists had given us a diagnosis of probable sporadic CJD-the prognosis was that she would die. There is no cure. You have to watch that person fade, watch the life literally slide from their eyes. They couldn’t tell us when, it could be weeks or months. What was unusual about Mum was that her symptoms didn’t present like previous cases. Sporadic CJD is usually a rapidly degenerating disease. With death happening within a few months. With mum, we believe it had started 2 years beforehand. 

From August to December the family spent a lot of time at her bedside watching our mum, sister, daughter, auntie, Nanna and friend disappear before our very eyes. She was literally a skeleton with skin. 

Towards the end, the nurses had her so dosed up on morphine (to ease the pain) that she was just an empty shell. 

After 4 months she finally slipped away. Saturday 10th December 2016 we lost my mum, aged 63.

Support us to find a cure for Creutzfeldt-Jakob disease (CJD). There is currently no cure but every day scientists and doctors are getting closer to finding a treatment. We aim to raise funds to support the use of an antibody drug developed for the treatment of patients with CJD. The first patient was treated at UCLH in October 2018.