On Tuesday 4th April 2023 our family received the devastating news that our beloved Jennie had Sporadic Creutzfeldt-Jakob disease (CJD). 

Sporadic CJD is a rare and fatal neurodegenerative disorder that affects the brain and nervous system, with rapid onset. The cause is unknown and there is no treatment or cure. 

CJD is a prion disease that affects 2 people per million each year worldwide. Symptoms include memory problems, confusion, clumsiness, unsteadiness, and jerky movements with progressive disability leading to loss of awareness, loss of mobility, loss of speech, and the need for full nursing care. 

Jennie had first started to experience symptoms of dizziness, shaking and blurred vision in July 2022.  As the months went on, other non-specific symptoms started, such as problems with balance, forgetfulness, anxiety, some confusion and depression. 

It wasn’t until March 2023 when her speech became affected, and she was having repeated falls, that it became clear something more sinister was happening to dear Jen. 

After a serious fall, a trip to A&E and some time in hospital with tests, brain scans and lumbar puncture, we then received the shattering diagnosis and prognosis. 

By the time that Jennie was diagnosed sadly she was already in a very confused state and mostly unaware of what was happening to her.  We were able to look after Jennie at home, surrounded by her loved ones, with the help of carers, until she needed to go into the Princess Alice Hospice on 5th July.  Our hearts were broken forever when she passed away on 8th July. She leaves behind her four children Ben, Harry, Darcie and Ralphie, who were her absolute world.

Seeing a loved one battling CJD is horrendous.  It is a cruel disease and our lives will never be the same again. 

Please help us to remember our beautiful Jennie and raise awareness and funding for research into CJD in the hope that one day in the future we might spare other families from experiencing this pain.  

The National CJD Research & Surveillance Unit aims to monitor the characteristics of all forms of CJD, to identify trends in incidence rates, to study risk factors for the development of disease and to contribute to improving the quality of care for those with CJD. Based in the Chancellor's Building at the University of Edinburgh BioQuarter, the Unit brings together a team of clinical neurologists, neuropathologists, scientists and others.