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Parents of a five-year-old girl have shared how they sing to her every night in hopes that she will remember the song after being diagnosed with a rare genetic condition that causes juvenile dementia.

Schoolgirl Abbie Cresswell will be “stripped” of her ability to walk, talk, see and eat over the “next few weeks, months or years,” according to mom Danielle and dad Ben.

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The courageous girl was diagnosed with juvenile Batten disease, a neurodegenerative disease so rare that less than four children have been confirmed to have it each year in the UK last August after her teacher reported his concerns about his vision in class.

In a loving effort to ensure their daughter never forgets them, Danielle, 30, and Ben, 33, sing Dancing In The Sky, released in 2016 by Canadian singers Dani and Lizzi, to Abbie every night in Hope that she can keep the memory.

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.

“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’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.

Dedicated Danielle said: “It’s really hard to watch her everyday knowing what’s going to happen.

“You 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.

Following an appointment with an optician, Abbie was given glasses to try on for five weeks, but when they failed to tell the 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 only 14,000 people worldwide.

Ms Cresswell said: “I had noticed that sometimes she would sit very close to the television, but I never really thought about it.

“Five minutes after the call started I broke down and when she started to explain it I had to walk away, I couldn’t take it anymore. Our lives were just torn apart.



Danielle recounted how the family’s life was “just torn apart” by the diagnosis. (Image: Michael Traill)

Batten disease, also known as neuronal ceroid lipofuscinosis, is a rare and debilitating disease for which there is no cure.

There are several different types that can determine the onset of symptoms, but all of them are fatal.

Abbie suffers from juvenile Batten disease, which occurs between the ages of four and seven.

It is caused when a child inherits two defective copies of a gene, one from each parent, which results in a buildup of waste products in the cells of the body causing blindness, loss of mobility and speech, seizures and Madness.

Doctors told her and Mr Cresswell, a plumber, that the disease would leave their youngest child ‘outgoing’ blind, suffering from seizures, dementia and that she would eventually be bedridden and would have to be tube-fed. . They were told Abbie would likely die as a teenager.

But that didn’t stop them from living fully each day to give Abbie, who can only see three feet in front of her, the best possible life.

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 £ 22,500. The money will also be used to purchase sensory toys and equipment for Abbie when needed.

At school, she learns to read braille, use a cane, and listen to where sounds are coming from to prepare for her blindness.

She also has a special computer with a magnifying glass at home to allow her to see the screen, and she plays kick-about with her friends using a soccer ball that has a bell in the center.

“She hasn’t let her stop him from doing what she wants,” Ms Cresswell said proudly.

“She has a lot of friends and she always plays with them and her toys. She loves to dance and sing – and wreak havoc. He’s a cheeky monkey. You just have to get started. “

But she added: “The other day I felt like I was kicked in the stomach when she said, ‘When I don’t have my eyes anymore, I won’t see where you are. are. I just thought ‘Oh my God’ and said ‘you will always know where I am, mom will never leave you, it’s you and me forever. And she said, ‘Yeah, you and me forever’. It was hard.



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Danielle said the hardest thing she and her husband have to do is tell their two older children what the future holds for Abbie.

She said: “They just ran away and never spoke, they didn’t come out of their rooms and didn’t eat. They only spoke to their grandmother.

“We weren’t going to tell them, but we didn’t want them to hear it from anyone else.”

Doctors reassured the couple that Kacey and Scott are not affected by the genetic condition, as the symptoms have reportedly already surfaced. But they both have a chance of carrying the defective gene.

Now that the family is looking to the future, next year they will be moving their home to have it renovated with an elevator and beams to support the hoists when Abbie needs them.

Until then, her proud father said, “We just want to make as many happy memories as possible and give Abbie the life she deserves.”

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