- B
Hi,
I am Sherrill (Eldest daughter of Billy).
My family- Mum Ellen, Sister: Angeline, Nieces: Larissa & Kenzie, Nephew - Riley and my husband - Jim felt so strongly about what we went through as a family over the last 4 weeks that we wanted to do something really positive to support further research into CJD, support other families better than we were and raise awareness. We relied very heavily on Google.
We have watched my dad a 76 year old a healthy man with no previous illnesses disappear a little every day for the past 4 weeks right in front of us. He was kind, caring, had a witty personality, always smiling and if he could help anyone he would. One of life's true gentlemen.
4 weeks ago- we noticed some wee signs of possibly getting older but nothing major. We were worried so mum took him to doctor, sent for CT scan and they said it was likely early onset dementia, so we prepared as a family to cope & care for dad.
Then as the days passed, there was a new symptom every day, paramedics were called as we thought it could be a stroke but no....so after 2 weeks of trying to get him into hospital for tests they finally took us seriously.
They did a lumbar puncture and we waited praying it was something reversible with treatment. As the days progressed my dad could not speak without having seizures where he would blank out, violent jerks and tremours and no feeling in his left arm & leg to the point that he was bed bound 4 days after his lumbar puncture. Still no information on tests or treatment from hospital.
by Sunday 15th Feb last week I got my last ever words from my dad whilst visiting before he closed his eyes and slept.
On Monday 16th Feb - we heard the words we never expected to hear .......Billy has Creutzfeldt-Jakob disease (CJD) - no treatment or cure, terminal.
We couldn't take it in....its a rare disease the hospital had only ever seen 3 cases!
There, followed 6 painful days of watching our dad die, knowing we could do very little but be there holding his hand.
We were willing god to take him in the end to stop his suffering as he had truly been to hell & back in those 2 weeks. He knew something was wrong but didn't understand it.
My dad lost his fight on Saturday 21st Feb leaving us heart-broken and quite honestly not ready to loose him as a husband, dad, father-in-law or grandad!
We have vowed not to let his suffering be in vain and we will continue to fundraise to support research into treatment and cure one day hopefully and to raise awareness
Prion diseases are a group of rare and fatal brain disorders that occur in humans and some animals. While they have been recognized for hundreds of years, they first came to the attention of the wider public in the 1980 with the appearance of BSE* (Bovine spongiform encephalopathy) in UK cattle and subsequently in 1996 with the identification of human variant CJD.
These prion diseases cause the brain to look sponge-like when looked at under a microscope, and for that reason they have also been called ‘spongiform encephalopathies’ (as an ‘encephalopathy’ in medical terms means ‘disease of the brain’).
Human prion diseases can be divided into three categories – sporadic (of uncertain cause), genetic (inherited) and acquired (transmitted as infections).
Thank you for taking the time to read our story and if you can spare a donation we are very grateful.
All monies raised will be split between research & support charities (links below)
Ellen, Sherrill, Angeline, Larissa, Kenzie, Riley, Jim
Grand-dogs - Archie & Bessie
xxx