Husband ‘couldn’t believe there was no cure’ to dementia

The father of former ski instructor Becky Barletta who was diagnosed with a rare form of dementia at the age of 31 has said her husband shed ‘so many tears’ after learning there was no cure.  

Allan Sharples, 68, told how his vivacious and fun loving daughter had been ravaged by the disease which has left her acting like a child, blowing raspberry noises to strangers and constantly repeating herself. 

He said that he and his wife Caroline, 61, could only watch her continue to decline mentally while she suffers from the hereditary condition frontotemporal dementia.

Mrs Barletta, from Hundon, Suffolk, is believed to be one of the youngest patients in the country to be battling the incurable disease affecting the frontal lobes of the brain which are responsible for social behaviour and intelligence. 

Allan Sharples, 68, revealed how her daughter’s husband shed ‘so many tears’ after Becky Barletta was diagnosed with dementia 

She now needs round-the-clock care and has been given just years to live in the ‘youngest case’ of dementia doctors have ever seen. 

Just 12 months after being diagnosed with frontotemporal dementia, Mrs Barletta now lives in her parents’ home.

Mr Sharples today revealed that his daughter’s life expectancy is now just five years.

Incredibly, she was working up to just 18-months-ago as a ski instructor, teaching the families of millionaires how to negotiate the slopes around the luxury resort of Verbier in Switzerland. 

But just five months after she married fellow ski instructor Lucca Barletta, her parents became worried about a sudden change in her behaviour. 

The signs were chillingly familiar for the couple as Mrs Barletta’s uncle and her mother’s cousin had already died from frontotemporal dementia within the previous ten years.

Mrs Barletta, from Hundon, Suffolk, is believed to be one of the youngest patients in the country to be battling dementia

Mrs Barletta, from Hundon, Suffolk, is believed to be one of the youngest patients in the country to be battling dementia

Mr Sharples said: ‘She started talking in an inappropriate way to clients, saying how she wanted to be pregnant and talking about periods. 

‘It was all in an anti social way which was out of context. 

‘It was first noticed by the owner of the European Snowsport School where she worked. 

‘We flew over to Verbier in March last year and my wife was wondering if she had got what her brother had. 

‘I just said, ‘Oh gosh, don’t let it be that’. ‘We were still thinking that she was maybe just depressed or a bit hyper after her wedding in October 2015 or maybe having some sort of breakdown. 

‘But when we saw her, we knew things were not right. We had to bring her home. A week after we came back from Verbier, we felt maybe she had made a bit of a recovery. 

‘We tried to talk to her, but she poo-pooed the idea that there was any problem and said, ‘What have I done wrong’. She just didn’t know that she had said or done anything wrong. 

‘She went back for one more week’s ski instruction, but that soon fell apart. She was supposed to be working with young children, but she just couldn’t concentrate.’ 

Becky Barletta pictured with her husband Luca, a fellow ski instructor, on their wedding day

Becky Barletta pictured with her husband Luca, a fellow ski instructor, on their wedding day

Mr Sharples, the retired owner of a string of bakery shops, said he and his wife had to persuade their daughter to go for tests at Addenbrooke’s Hospital where her condition was diagnosed. 

He said: ‘My wife’s brother James had the same dementia when he was aged in his 50s. 

‘He went downhill and had to come and live with us. But he got worse and worse.

‘He was ending up in next door neighbour’s houses with no clothes on, only a dressing gown. 

‘He was fairly gentle and was not aggressive to anybody, but he had to go into a home and he he died four-years-ago.’ 

Mr Sharples took his daughter to the dementia specialist Professor James Rowe who had earlier diagnosed her uncle with the condition at Addenbrooke’s Hospital, Cambridge. 

He said: ‘We circumvented other doctors as we already knew Professor Rowe at Cambridge was the foremost expert.

‘We took Rebecca straight to him because of our family history. You could actually see the damage to the grey matter of her brain in the scans which we saw. 

‘Luca came with us to the meetings. He has taken everything that has happened very well, but he couldn’t believe that there was no cure or treatment. 

‘There have been so many tears since then. She was so young with whole world ahead of her. They had just got married and had not even been on honeymoon. 

‘They had planned to go to Japan and ski on Mount Fuji, but it never happened. 

‘Rebecca is the youngest person with it to have been seen in Cambridge and presumably she must be one of the youngest in the country as Professor Rowe is one of the leading experts.’ 

Stunning Becky pictured centre on her wedding day - just months later, she requires constant care

Stunning Becky pictured centre on her wedding day – just months later, she requires constant care

Mrs Barletta’s decline since the diagnosis has been rapid is now being cared for by her parents at their farmhouse home in Hundon near Bury St Edmunds, Suffolk, with the help of her sister Sophie, 30, who is married with two young children and lives next door.

Luca is still working as a ski instructor during the winter and managing a hostel for hikers and climbers in the Italian Alps during the summer, but he is making regular visits back to Suffolk to see his stricken wife. 

Mr Sharples said: ‘We always knew Rebecca as this vivacious young woman who was doing everything. It has been horrendous for our family. 

FRONTOTEMPORAL DEMENTIA

Frontotemporal dementia is an uncommon type of dementia that mainly affects the front and sides of the brain (frontal and temporal lobes) and causes problems with behaviour and language.

Dementia is the name for problems with mental abilities caused by gradual changes and damage in the brain.

Dementia mostly affects people over 65, but frontotemporal dementia tends to start at a younger age. Most cases are diagnosed in people aged 45-65, although it can also affect younger or older people.

There’s often a genetic link. About one in every three people with frontotemporal dementia has a family history of the condition.

If you have a family history of frontotemporal dementia, you may want to consider talking to your doctor about being referred to a geneticist and possibly having a genetic test to see if you’re at risk.

Source: NHS

‘It was one thing to have Caroline’s brother have it when he was in his 50s, but when it is your own daughter who is not much older than 30, it is just tragic. 

‘Her life expectancy has now been reduced to five years. Her brain will eventually completely shut down until she is unable to speak.

‘We have watched two of our close family die from this. When you have it, your behaviour totally changes as parts of your brain shut down. 

‘It is not even two-years since Rebecca was diagnosed. It has all happened so quickly.’ 

Mrs Barletta can string together only short sentences, usually talking about her family’s pet border terrier, while whistling or counting out aloud.

Mr Sharples has to warn visitors that she might break their mobile phone by putting it in her mouth. 

He said: ‘She still has a repertoire of stories and repeats them verbatim each time.’ 

A year ago she was still taking herself out for ten mile runs and visiting the gym twice a day, but he recently had to stop her from going on country walks by herself. 

Mr Sharples said: ‘She used to be OK going out as she knew the geography. But it got a bit traumatic a few weeks ago when she turned up at the local pub and started picking up food from people’s plates. 

‘She had worked there when she was 15 as a waitress and she remembered it. She also started walking into people’s houses. 

‘The first time she did it was to a family friend who brought her home, but there have been other occasions.

Becky is described by her sister Sophie as a charismatic 'blonde bombshell' who 'lit up the room whenever she went'

Becky is described by her sister Sophie as a charismatic ‘blonde bombshell’ who ‘lit up the room whenever she went’

‘We have just been able to secure funding to employ a carer who now goes out with her. Only a year ago, she used to go for ten mile runs and went to the gym twice a day.’ 

Mr Sharples sticks to a daily routine with his daughter, taking her to buy packets of sushi for her lunch from her local Tesco. 

He said: ‘She used to love it before she got dementia and it is something that has stuck with her. When we go to Tesco, all the customers and staff all know her. 

‘Most people are very positive and you only get the odd person who is taken aback by her behaviour. She gets everyone in the store doing her noises.’ 

Mr Sharples said he believed that Mrs Barletta may have first been showing symptoms of her dementia shortly after her wedding.

He added: ‘You can look back in hindsight and say there were signs. Up to a year before, she had a slight lack of interest in certain things and some one dimensional thinking. Even a few months before she seemed a bit hazy.’ 

Mr Sharples said his daughter had studied photography at the London University of the Arts before working as a professional photographer, spending a season as a chalet maid and setting her heart on becoming a ski instructor. 

She met Luca in 2013 in New Zealand when she was doing another module to qualify as a more advanced ski instructor. 

The couple also travelled together to India and worked in an orphanage in Nepal shortly before the country was devastated by earthquake in 2015. 

They married in her home village of Hundon and had been planning to buy a home together in Verbier. 

But Mr Sharples said his family had now been left with the constant worry that others could be struck down with the same disease. 

He said that it had bypassed his wife’s mother and two uncles before striking down her brother and cousin. 

He added: ‘We asked whether it could be triggered by something like an accident as Rebecca had a few falls while skiing and her uncle had once gone through a windscreen.

‘But Professor Rowe said he believed that they were probably just born with it, although the hospital has been unable to identify the faulty gene.’ 

Her sister Sophie said Becky’s diagnosis was the youngest case specialists had ever seen – and have given her just ten years to live.

She told the Cambridge News: ‘I was always so proud of her, so proud to say: ‘My sister is a ski instructor’. 

‘I wasn’t jealous of her but she was like ‘the blonde bombshell’ compared to me.

‘She was such a good ski instructor and especially with children – all her clients loved her.

‘She wasn’t fake tan and nails she was authentically beautiful. She was outdoorsy and outgoing. Everybody loved Becks, she was beautiful. She still is.’

Sophie lives with her husband and two children next door to her parents’ home, where Becky is cared for.   

She added: ‘They say the younger the patient the more rapid it can be and it has been very rapid. 

‘There is not much of our old Becky left. She repeats the same stories to us and says inappropriate things. I find it so sad to watch.’

Becky was diagnosed last August by the same doctor who diagnosed her uncle James with the condition. James died in his 50s as a result of the disease.

Her mother’s cousin Philipa also died from the disease in her 40s. 

Writing on a JustGiving page to raise funds towards research, Sophie added: ‘There is currently no cure or treatment for any dementia or even treatment to stop or slow its progression. 

‘We need to change this as soon as possible and can only do this through research and raising money to support this research. 

‘Whilst unfortunately this will not help Becky, we know she would want us to try and halt this vile disease in it’s tracks for the benefit of the future generations in our family and other families who have been affected by dementia.’ 

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