Skip to main content

Little Abbie Cresswell’s parents sing for her every night – in hopes the five-year-old will never forget them.

The brave girl is like any other carefree child who loves to dance and sing her favorite songs.

But Abbie has a rare genetic condition that causes dementia, and with no known cure, she’ll be lucky enough to turn 20.

It has already started to destroy her eyesight, and in “weeks, months, or years” will deprive her of her ability to walk, speak, and eat.

Unaware of her plight, just a few days ago, the little girl was bombarded with excitement after her first visit to the Tooth Fairy, and she has already written a letter to Santa Claus asking for “a hamster, a fish rose and 50 bath bombs “. .

Caring mother Danielle, 30, 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.

Abbie with mum Danielle and dad Ben in her room where they sing for her every night. Abbie is reading a sensory book.

So, for the sake of love so their daughter will never forget them, Ms Cresswell and her husband Ben, 33, perform Dancing In The Sky, released in 2016 by Canadian singers Dani and Lizzi, at Abbie every night in the 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.

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, “Abbie has CNL3 and the only treatment available costs $ 1.7 million in America.

“How can someone collect that kind of money?” I sometimes think I can relate because it’s so rare, but then I’m like, why not try something here if it can save someone so young? “

But she stressed: “We will never give up hope. I just hope Abbie doesn’t progress too fast, so if anything comes up it might help.

Abbie cresswell
Abbie cresswell

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 her dream of going to Walt Disney World in Florida is about to come true following a fundraising appeal by a family member that raised more than £ 22,500. The money will also help purchase sensory toys and equipment for Abbie when needed.

The family ordeal began just weeks after Abbie started school last August when her teacher noticed she was having trouble seeing in class.

Following an appointment with an optician, she was given glasses to try on for five weeks, but when they failed to tell the difference she was referred to specialists at 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.

Doctors explained to 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 life possible.

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 didn’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 had been 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.

But she admitted that the hardest thing she and her husband had to do was tell their two older children what the future held 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 someone 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 create as many happy memories as possible and give Abbie the life she deserves.”

Batten disease 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 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.

The only potential treatment known to her parents for Abbie’s CLN3 type costs over £ 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.

Many children with Abbie’s disease live into their teens, but some can survive into their early twenties.

The London-based Batten Disease Family Association supports families in the UK and helps make it easier to find potential therapies and treatments.

Stay tuned for the latest news from across Scotland and beyond. Subscribe to our daily newsletterhere.