A 32-year-old newlywed ski instructor needs round-the-clock care and has been given just years to live in the ‘youngest case’ of dementia doctors have ever seen.
Becky Barletta from Hundon in Suffolk was diagnosed with the hereditary condition just one year ago, and her devastated family say it has now altered her personality ‘beyond all recognition’.
Her sister said the ‘blonde bombshell’ lit up a room wherever she went, before she was given the tragic diagnosis at the age of just 31.
Becky Barletta pictured with her husband Luca, a fellow ski instructor, on their wedding day
Becky is described by her sister Sophie as a charismatic ‘blonde bombshell’ who ‘lit up the room whenever she went’.
But just one year after being diagnosed with frontotemporal dementia, she needs 24 hour care.
Her 30-year-old sister Sophie said her sister’s diagnosis was the youngest case the specialist had ever seen.
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.’
Stunning Becky pictured centre on her wedding day – just months later, she requires constant care
Becky is described by her sister Sophie as a charismatic ‘blonde bombshell’ who ‘lit up the room whenever she went’
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.
‘It is not because I am embarrassed, but because 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.
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 is unlikely Becky will live beyond ten more years. 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.