Abbie Cresswell, 5, from Aberdeenshire, suffers from a horrific rare disease that causes dementia – most commonly seen in the elderly – in children and she has no cure
The heartbroken parents of a five-year-old girl with dementia sing for their daughter every night in the hope that she will never forget them.
Five-year-old Abbie Cresswell has a horrific rare genetic condition that causes dementia in children – and has no known cure.
The little girl, who loves to dance and sing her favorite songs, will have the chance to reach her twenties, the Daily check-in reports.
The cruel disease – so rare that only four children are diagnosed in the UK each year – has already started to blind him.
In “weeks, months or years” she will no longer be able to walk, talk or eat.
With the only known treatment, a US-based stem cell procedure costing Â£ 1.2million – Abbie’s family are working hard to give him the happiest memories they can give him.
And in a desperate attempt to forge lasting memories, Danielle, 30, and her husband Ben Cresswell, 33, sing her Dancing in the Sky, a tune by Canadian singers Dani and Lizzi, every night.
Parents say it is difficult to watch their daughter grow up, oblivious to what lies ahead and knowing the impending suffering that awaits them.
Grieving the loss of her daughter’s future, Danielle, 30, said: âIt’s really hard to watch her everyday knowing what’s going to happen.
âYou wouldn’t know by looking at her – she always plays with her friends, loves to play with her Barbies and babies and goes out dancing on the streets every Friday.
“It’s horrible that there is something so cruel that takes everything away from him. The only thing this disease doesn’t take away from you is your hearing.”
So, for the sake of love so that their daughter will never forget them, Danielle and her husband Ben, 33, sing Dancing In The Sky, released in 2016 by Canadian singers Dani and Lizzi, at Abbie every night in the hope she can remember it.
Ms Cresswell, from Inverboyndie, Aberdeenshire, said: ‘I hope that by drumming her she will always remember the song and know who we are when we sing it up the stairs.
âWe 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’ll always know it’s mom or dad talking to her.
Her grandmothers also have songs to help Abbie remember them – You Are My Sunshine and A Night to Remember.
Abbie suffers from juvenile Batten disease, a neurodegenerative disease so rare that less than four children are diagnosed with it each year in the UK.
There are 14 different types of the deadly disease and last year the Scottish government approved the use of a drug that can help slow the progression of people with the infantile variant CNL2.
But Ms Cresswell, a caregiver, said, âAbbie has CNL3 and the only available treatment costs $ 1.7 million in America.
“How can someone collect that kind of money? I sometimes think I can figure it out because it’s so rare, but then I’m like, why don’t we try something here if it could save someone so young? “
But she stressed: âWe will never give up hope. I just hope Abbie doesn’t progress too fast, so if anything comes out it might help.
The family, including Abbie’s sister Kacey, 13, and brother Scott, 11, are now focused on making as many memories as possible while they can.
The silly young princess, who turns six in January, has already enjoyed a trip to Disneyland Paris this year, where she spent fun days dressed as Elsa from Frozen.
Now his dream of going to Walt Disney World in Florida is about to come true following a fundraising appeal from a family member that raised more than Â£ 22,500. The money will also help purchase sensory toys and equipment for Abbie when needed.
Juvenile Batten disease, from which Abbie suffers, begins between the ages of four and seven.
Defective genes cause waste to build up in cells, which ultimately leads to blindness, loss of mobility and speech, seizures, and dementia.
The only treatment parents know of, a stem cell transplant, is in the United States and costs Â£ 1.2million.