We sing to Abbie every night so she knows who we are when dementia steals her memory
Brave five-year-old has rare condition and will be lucky to live to 20
LITTLE Abbie Cresswell’s parents sing to her every night – in the hope the five-year-old never forgets them.
The brave youngster is like any other happy-go-lucky child who loves to dance and sing along to her favourite songs.
But Abbie has a rare genetic condition which 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.
Oblivious to her fate, just days ago the little girl bombed about in a flurry of excitement after her first visit from the tooth fairy and she has written a letter to Santa asking for “a hamster, a pink fish and 50 bath bombs”.
Mum Danielle, 30, said: “It’s really hard to watch her everyday 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.”
To ensure their daughter never forgets them, Danielle and husband Ben, 33, sing Dancing In The Sky, released in 2016 by Canadian singers Dani and Lizzi, to Abbie every night in the hope she can retain the memory.
Danielle, from Inverboyndie, Aberdeenshire, 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 sing the same song every night and she knows all the words. 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.”
The only thing this doesn’t take away is your hearing DANIELLE CRESSWELL
ABBIE’S MUM
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 fewer than four children are diagnosed with it every year in the UK.
The only potential treatment her parents know about for Abbie’s CLN3 type costs more than £1.2million. It is a form of gene therapy, which aims to reverse symptoms with a stem cell transplant and is only available in America.
There are 14 different 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 CNL2 variant.
But Daniella, a carer, said: “Abbie has CNL3 and the only treatment available costs £1.2million in America. How does anyone raise that kind of money?
“I sometimes think I can understand because it’s so rare but then I think, why don’t we try something here if it could save someone so young?
“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 while she is able.
The princess-daft youngster, who turns six in January, has already enjoyed a trip to Disneyland Paris this year, where she spent fun-filled days dressed as Elsa from Frozen. Now her dream to travel to Walt Disney World in Florida is about to come true following a fundraising appeal by a family member which generated more than £22,500.
The money will also help buy sensory toys and equipment for Abbie when needed.
The family’s ordeal began just weeks after Abbie started school last August when her teacher noticed she was struggling to see in class.
Following an appointment with an optician, she was given glasses to try for five weeks but, when they failed to make a difference, she was referred to specialists at the Royal Aberdeen
Children’s Hospital. Weeks later via video link, due to Covid-19 restrictions, and following a brain scan and blood tests, doctors dealt the couple the devastating blow that Abbie had Batten disease, which affects just 14,000 people worldwide.
Danielle said: “I had noticed that sometimes she would sit really close to the TV but I never really thought anything of it.
“Five minutes into the call, I just broke down and, when she started explaining it, I had to walk away, I couldn’t take any more. Our lives were just torn apart.”
Doctors explained that the disease would leave their “outgoing” youngest child blind, with seizures, dementia, and eventually she would be bed bound and have to be tube-fed.
They were told Abbie would likely pass away in her teenage years. But that has not stopped them living every day to the full to give Abbie, who can now only see a metre in front of her, the best life possible.
At school, she is learning to read Braille, use a cane and listen to where sounds are coming from to prepare her for when she is blind.
She also has a computer with a magnifier at home to enable her to see the screen, and she plays kickabout with her friends using a football that has a bell in the centre. Danielle added:
“She has not let it stop her from doing what she wants.
“She has lots of pals and she still plays with them and her toys. She loves dancing and singing – and making a mess. She’s a cheeky monkey. We just have to get on with it.”
But she went on: “The other day, I felt like I had been kicked in the stomach when she said, ‘When I don’t have my eyes any more, I won’t see where you are’. I just thought, ‘Oh my God’, and I said, ‘You will always know where I am, Mummy will never leave you, it’s you and me forever’. And she said, ‘Yeah, me and you forever’. “That was hard.” Danielle admitted the hardest thing she and her husband had to do was tell their two older children.
She said: “They just ran away and never spoke. They wouldn’t come out of their rooms and wouldn’t eat. They only spoke to their Granny.
“We weren’t going to tell them but we didn’t want them to hear it from anyone else.”
Kacey and Scott are not affected by the genetic condition but they both have a chance of being carriers.
Now, as the family look to the future, next year they will move out of their home to have it renovated with a lift and beams to support hoists.
Plumber Ben said: “We just want to make as many happy memories as we can and give Abbie the life that she deserves.”