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'There isn't much of her left': "Blonde bombshell" diagnosed with rare dementia at 31 in 'youngest case doctor had seen'

Mirror logo Mirror 4/09/2017 Jamie Bullen

Credits: Just Giving / Sophie Gilbert © Provided by Trinity Mirror Shared Services Limited Credits: Just Giving / Sophie Gilbert A newlywed ski instructor was diagnosed with a rare form of dementia aged just 31 in the youngest case doctors have seen.

Becky Barletta was described by her family as a "blonde bombshell" who lit up the room before she was struck down by her illness.

But now relatives say Becky, now 32, requires round-the-clock care as her condition - known as frontotemporal dementia - has altered her personality beyond all recognition.

It is unlikely Becky will live beyond the next 10 years.

Her sister Sophie, 30, told how dementia has robbed her dreams of family as she revealed "there is not much of our old Becky left," the Cambridge News reports.

She said: "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 young children next door to her parents' home in Suffolk, where Becky receives round-the-clock care.

The deterioration of her sister's personality has been rapid, as the hereditary condition takes hold of her brain's frontal lobe, the area responsible for social intelligence and behaviour.

She said: "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 hard when we go out, she is off down the street asking people if they can make a funny noise and that sort of thing.

"It is not because I am embarrassed, but because I find it so sad to watch. Some people are amazing and do the noises and chat with her but then there and some who not understand, because she looks well from the outside, and can be quite short with her.

"I stand and think: 'If you had the honour of meeting Becks when she was well then you wouldn't be so quick to judge'."

Becky was diagnosed last August 24, by the same doctor at Addenbrooke's who diagnosed her uncle James with the condition. James sadly died in his 50s as a result of the disease.

Becky and Sophie's mother's cousin Philipa also died from the disease in her 40s. Sophie says her sister's diagnosis was the youngest case the specialist had ever seen.

Credits: Cambridge News © Provided by Trinity Mirror Shared Services Limited Credits: Cambridge News

But it was not an easy route getting Becky to go for a medical assessment and the family were hoping against hope that it was something else, perhaps the stress of her forthcoming wedding.

The symptoms came in the months leading up to Becky's wedding.

Sophie recalls: "She began an obsessive running regime because she obviously wanted to look her best, but her colleagues noticed changes too.

"She was displaying inappropriate behaviour with clients on the slopes and not looking after them as well as she had previously."

Despite her family and friend's concerns Becky lacked awareness of her condition, and refused to get into the car to go a medical assessment.

It was only after her sister pleaded with her and said she would do the tests as well to check for the hereditary condition that she relented.

But despite tests there is no faulty gene yet discovered which the family carry that explains why some of them develop the condition.

"She had brain scans and written tests. So they said spell the word 'world' backwards and things like that, and I did it at the same time.

"It's been a year now. The situation is so hopeless, but we want to try to dredge something remotely positive out of it."

Added to her worry about her sister, Sophie has to deal with the terrifying possibility that she may also develop the disease.

"As it is hereditary, I'm living with the fear I or my children might get it, so to watch my sister's deterioration is a daily reminder of how cruel this illness is.

"We just want a cure so our family and other families don't have to go through it - whether it is your sister at 31 or your grandma at 90, either way. A lot of people think it is an inevitable part of aging and it isn't - its a disease."

It will be a rapid deterioration, as the disease progresses she will find it hard to swallow and eventually stop being able to communicate as her body slowly shuts down.

"I talk about it now as though it is not happening," says Sophie.

"I can't imagine how hard it is for her husband Luca because they only got married in October 2015.

"Being a mum is all she ever wanted and she still says now: 'Three is the magic number,' because she always wanted three children. She always wanted children but they didn't get round to it before everything happened.

"I am quite numb because its just facts now. I feel like it's happening to a different family because its such a big thing that I cant process it.

"It is out with the realms of our normality and it is so hopeless and awful that I think if I did try to rationalise it we couldn't cope."

The family are just trying to keep going, says Sophie. And they are holding a walk with friends later next month to raise funds for the Alzheimer's Society's research into the condition.

Despite the disease Becky still loves walking and watching TV and the family hope it will be a chance for people to see her and talk to her.

Katie Blackburn, Alzheimer’s Society spokeswoman for the East of England, said: “Frontotemporal dementia causes damage to parts of the brain which are responsible for our behaviour, our emotional responses and our language skills. This type of dementia is less common than other forms such as Alzheimer’s disease and predominantly affects younger people.

“Dementia doesn’t care who you are and can affect anyone. Being diagnosed at a younger age is likely to present a different set of challenges for example they may still be working, have financial commitments or dependent children.

“Alzheimer’s Society is here for anyone affected by dementia – wherever they are, whatever they're going through. It is great to hear the family are uniting against dementia and holding their own Memory Walk to raise awareness.”

If you would like to help the family you can donate to Becky's Just Giving page .

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