We sing to Abbie every night in the hope our little girl will never forget us
Parents of five-year-old with condition that causes dementia tell of devoted battle to make as many memories as possible
LITTLE Abbie Cresswell’s parents sing to her every night in the hope she will never forget them.
The five-year-old is like any other happy-go-lucky child who loves to dance and sing along to her favourite songs.
But Abbie has a rare condition that causes dementia and, with no known cure, she will be lucky to reach the age of 20.
It has already begun to destroy her sight and, in ‘weeks, months or years’, will rob her of her ability to walk, talk and feed herself.
Her devoted mother Danielle, 30, said: ‘It’s really hard to watch her every day knowing what’s going to happen.
‘You wouldn’t know to look at her – she still plays with her friends, loves playing with her Barbies and babies and goes to street dance every Friday.
‘It’s horrible that there is something this cruel that will take everything away from her. The only thing this disease doesn’t take away from you is your hearing.’
In a bid to ensure their daughter never forgets them, Mrs Cresswell and husband Ben, 33, sing Dancing In The Sky, by Cana
‘Our lives were just torn apart’
dian duo Dani and Lizzi, to Abbie every night. Mrs Cresswell, from Inverboyndie, Banffshire, said: ‘Hopefully by drumming it in she will always remember the song and know who we are when we come up the stairs singing it.
‘We have the same song for me and her dad so, when the time comes, she will still know it’s mum or dad who’s speaking to her.’
Her grandmothers also have songs to help Abbie remember them – You Are My Sunshine and A Night to Remember.
Abbie has juvenile Batten disease, a neurodegenerative disorder so rare that fewer than four children are diagnosed with it every year in the UK.
There are 14 types of the fatal condition and last year the Scottish Government approved the use of a drug that can help slow the progression of those with the infantile CLN2 variant.
However, the only available treatment for Abbie’s type of the disease, CLN3, costs $1.7million (£1.3million) in America.
Mrs Cresswell said: ‘We’ll never give up hope. I just hope Abbie doesn’t progress too quickly, so if something does come out, it will be able to help her.’ The family, including Abbie’s sister Kacey, 13, and brother Scott, 11, are now focused on making as many memories as they can.
Their ordeal began last August just weeks after Abbie started school, when her teacher noticed she was struggling to see in class.
Abbie was initially given glasses, but when they failed to make a difference, she was referred to specialists at the Royal Aberdeen Children’s Hospital.
Weeks later, doctors gave the devastating news that Abbie had Batten disease, which affects just 14,000 people worldwide.
Mrs Cresswell said: ‘Our lives were just torn apart.’
Doctors explained to her and Mr Cresswell, a plumber, that Abbie was unlikely to survive past her teens. But the brave youngster, who can now only see a yard in front of her, is learning braille and living life to the full.
Next year, the family will move out of their home to make way for renovations to assist with Abbie’s condition. Until then, her proud father said: ‘We just want to make as many happy memories as we can and give Abbie the life that she deserves.’
Batten disease, also known as neuronal ceroid lipofuscinosis (NCL), is an incurable genetic condition.
There are several different types, which can determine the onset of symptoms, but all are fatal with some people surviving into their early twenties at most. It is estimated between 100 and 150 children in the UK live with some form of NCL, which becomes noticeable between the ages of four and seven.
It is caused when a child inherits two faulty copies of a gene, resulting in a build-up of waste in the body’s cells causing blindness, loss of mobility and speech, seizures and dementia. Siblings of affected children may be carriers of the gene but be unaffected,