ALZHEIMER’S VICTIMS AGED 6 & 10
Parents tell of heartache after daughters were struck down by cruel disease
TWO sisters were struck down by crippling dementia aged just six and 10.
Emily, who has since died, and Sarah Bushaway are among the youngest ever victims of the cruel disease.
Mum Lisa, 48, said: “It has robbed us of so much.”
MARK and Lisa Bush away have spoken of the heartbreak at watching their two healthy daughters deteriorate into physical and mental wrecks after being struck down with childhood dementia.
The couple, both 48, said older girl Emily was diagnosed with crippling Niemann-Pick type C when she was just six and her sister Sarah at 10, seven years later. They are the youngest siblings ever to have the disease.
Both suffered memory loss, severe confusion and seizures before the condition became so bad they were left unable to walk or talk.
Tragically, Emily died at the age of 21 after a blunder at a hospice with her breathing tube. And Sarah, now 19, is also expected to die young because of the rare genetic disorder that affects only around 700 people worldwide. Former nanny Lisa, who with Mark became a full-time carer for their daughters, said: “It’s such a cruel disease, one of the worst illnesses I have ever heard of. It’s robbed us of so much.
“If anyone developed dementia, we expected it to be me and Mark, when we reached old age.
“We never expected our young girls to need constant care.”
The couple have decided to speak out in a bid to raise awareness about NP-C.
Lisa told how Emily was at primary school when she started suffering loss of balance, muscle stiffness, difficulty speaking, confusion and memory loss. The youngster’s behaviour also changed, which led to her being sent home by teachers.
Lisa added: “Emily became very hyperactive and clumsy at school.
“She would fall over when with her friends and would come away looking traumatised, as if a normal school day had unsettled her.
“She’d say things like, ‘I’m going to a party,’ over and over again. And I’d have to tell her something three times, before it sank in. Mark and I felt like she was regressing. She’d come out of school covered in food, unable to feed herself properly. It just wasn’t right.”
The worried couple, of Letchworth, Herts, sought medical help and were initially advised their daughter had ADHD.
But a neurologist at London’s Great Ormond Street Hospital carried out tests and Emily was diagnosed with NP-C in spring 2001. The pair both carry the defective gene that causes NP-C, meaning their children had a one in four chance of developing it. Lisa added: “We had no idea we were carriers. Now we were told Emily would be lucky if she lived beyond her teens.
“It was absolutely devastating to hear that our child would keep regressing to a point that we would lose her so young.
“We cried and cried for Emily, for all the things she would be robbed of… boyfriends, a husband, children of her own. The list was endless. It was very tough. Our life changed beyond recognition. “We had to move house three times to cater for her needs, while trying to give our other kids the best childhood we could.” The girls also have an older brother Harry, now in his 20s, who does not have NP-C. Former warehouse worker Mark and Lisa were dealt another terrible blow when Sarah, aged 10, started showing the same symptoms. She once vanished from the family home with their dog Bow, only to be found confused, standing by the side of a main road by Mark. Lisa said: “Like Emily, she needed a lot of support at school, she struggled in class. “Mark turned to me and said, ‘We need to know.’ Deep down, I think we knew. “I think that’s why, when Sarah was finally diagnosed at Great Ormond Street Hospital in 2008, I didn’t react.” Sarah’s condition soon deteriorated, leaving her confused and with increasingly erratic behaviour. During one family trip to Southend when she was 11, she disappeared and was found on a roller coaster alone. She would also shout
It’s such a cruel disease, one of the worst. It’s robbed us of so much LISA ON HOW CHILDHOOD DEMENTIA AFFECTS THEM
inappropriate comments at strangers, once yelling, “You’ve got a big leg,” at a man with arthritis. Her parents had to build a 5ft fence around the house to stop Sarah from escaping as her behaviour became increasingly unpredictable. By 17, she could no longer walk or talk and communicated through her iPad.
Last month she even lost the ability to write her own name. The couple leave notes around the house with prompts which say, “My name is Sarah” and “I like pop music”.
Lisa told how having two children struck down by the same wicked disease made her question her Christian faith.
She said: “I used to have a faith, but having two children with this disease has stopped that.
“With one, you think you can manage, and they’ve been sent by God for you to look after, but two? That’s simply too cruel.”
Mark and Lisa had provided round-the-clock care for their girls unaided until 2013 when they finally accepted professional help. Mark said: “Me and Lisa have always been there for each other and for our children.”
Emily died in May last year at Helen and Douglas House hospice in Oxford where she was having respite care for five days. An inquest into her death last month heard how she was unable to breathe after a nurse mistakenly binned a vital part of her breathing tube.
Katie Philips told the hearing she unintentionally removed a “whisper” valve, which prevents carbon dioxide building up in the body. She was found unconscious by Mark and pronounced dead in hospital later.
Recording a narrative verdict, Oxfordshire coroner Darren Salter said Emily’s “accidental death was contributed to by neglect”. Mark and Lisa are considering taking legal action against the hospice with the help of their solicitors at Slater and Gordon.
A spokesman for the hospice said: “We acknowledge fully and respect the findings of the coroner’s ruling.
“We have taken action to ensure that this type of incident won’t happen again.”
The Crown Prosecution Service ruled out any criminal proceedings and Thames Valley Police confirmed there have been no arrests over Emily’s death.
Health and social care regulator the Care Quality Commission are reviewing evidence from the case.
Lisa said: “No one should have to bury their child. When Emily died, a part of me died with her. We are so devastated by her loss and miss her every day.
“Luckily having Sarah gets me up every day. We don’t know what the future holds for her, but we know that our time with her is special.
“Now we want to continue Emily’s legacy, by making more people aware of the disease.”