Family left devastated by ‘terrible, terrible disease’
WHEN Jonathan Bennett looks at his brother and sister it’s a devastating reflection of what his own future has in store.
All three siblings have the cruel hereditary illness, Huntington’s Disease – a degenerative brain condition which they describe as “Parkinson’s, Motor Neurone Disease and Alzheimer’s all rolled into one”.
While 31-year-old Jonathan is still able to live independently for the time being, his brother Christopher, 37, and sister, Elizabeth, 29, are both residents at Pendine Park’s Penybryn Care Home in Wrexham.
Jonathan, who was around 27 when his symptoms started to present themselves, says he “knows what’s coming, but has grown to accept it”.
He said: “It’s easier for me in a way as I can look at Chris and Lizzie and see what they have gone through. I want to go on living independently as long as I can and do what I can to raise money for the Huntington’s Disease Association. But, more important- ly, I want to raise awareness of the condition. I’ve completed the Manchester, Chester, Conwy marathons, several times in fact, and a rock night I organised at Llay British Legion a few weeks ago raised more than £2,000. If people don’t know about the condition the things won’t change.”
He added: “It’s a terrible, terrible illness and I know what is going to happen to me as it’s happened to my brother and sister. I know what’s coming but have grown to accept it.”
Jonathan’s older brother, Christopher, showed the first signs he might have the disease when he was 18 and after counselling and blood tests, he was diagnosed.
Their stepfather, Ian James, from Llay, said: “Christopher went off the rails in truth and began drinking heavily.
“Lizzie developed Huntington’s next when she was 16. It began with depression and hiding in the toilets at school.
“Her physical problems came on very rapidly and now she can’t walk, talk and is peg-fed through her tummy as she can’t swallow. She can still say the odd word, but it’s getting worse. But she is still acutely aware of everything that is being said or done around her. In Christopher, Jonathan and Lizzie’s case it was their dad that carried the gene.”
Now Ian, along with the siblings’ mum, Kim James, have joined forces with Pendine Park to launch a new awareness campaign and issued an emotional plea for more research into Huntington’s Disease amid renewed hope of a cure.
Kim said: “It’s very rare to have three siblings develop Huntington’s disease and even rarer that all three developed Juvenile Huntington’s in that they were so young when they were diagnosed.
“Having Christopher and Lizzie together in Penybryn, which specialises in brain injury and neurological conditions, is a Godsend.
“Until February, I was Lizzie’s full time carer, but she has settled in Penybryn very quickly. Christopher has been here four years now and to have him settled is wonderful. It’s the first place he has actually been able to settle.”
Penybryn manager Tracey Cuthill said she and her staff care for a total six residents who suffer from Huntington’s, including Christopher and Lizzie.
She said: “There is no doubt Huntington’s is a terrible disease. It’s vital we raise awareness of the disease and how it manifests itself in those that suffer from it. It’s wonderful that Kim, Ian and Jonathan have talked about their experiences so people can gain an understanding of this awful condition affects the central nervous system and brain.
“It causes involuntary muscle movement and changes in the brain that lead to emotional swings that can result in challenging behaviour and an inability to control emotions.”
Di Lyes and Alwena Potter are Huntington’s Disease specialist advisors and have worked with the family for many years.
Di said: “I’ve worked with Christopher for a long, long time. I first got to know him when he was just 18 and he’s now 37. This was a handsome young man that wanted to go to university.
“He always had a girl on his arm and just wanted a relationship, get married, have a career and have his own family.
“He has had to watch his friends do all these things and that has led to anger and frustration. Who could blame him?
“I want to see awareness of the disease increase, so pub landlords, supermarket workers, police officers and other professionals understand the disease and how it can manifest itself in behaviours and someone’s physical appearance.”