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Emily Atkin, 10, from Cottingham, East Yorkshire, was diagnosed with a rare terminal illness following a routine eye test at Specsavers three years ago.

Emily Atkin, from East Yorkshire, was tragically diagnosed with juvenile Batten disease this year

The family of a 10-year-old girl have been asked to make lasting memories with her following a heartbreaking diagnosis that came after a routine appointment with Specsavers.

Emily Atkin, from Cottingham, East Yorkshire, had the eyesight test in 2019, with the optician noting her eye was flat where it should be curved.

She was referred to hospital and sent for a brain scan before her vision began to deteriorate and she was eventually diagnosed with Juvenile Batten’s disease in January.

This rare genetic condition causes loss of sight, speech and mobility over time and children who suffer from it are not expected to live beyond their teens.

Emily’s family were shocked by the diagnosis as she had always been completely healthy, reports Hull Live.

The hospital has now advised them to make as many memories as possible with Emily before her illness gets worse.

Pictured left are dad Ricky, Emily, brother Lewis and mom Becky



Rebecca Atkin shared how the first sign of her daughter’s condition came from a routine Specsavers appointment in the summer of 2019.

She said: “Emily has had glasses since the age of four, but her vision was only at the limit of having to wear them.

“During the appointment, while taking pictures of her eyes, the optician noticed that part of Emily’s eye was flat where it would usually be curved and referred her to Hull Royal Infirmary.

“Due to the need for a specialist, Emily was referred to a hospital in Newcastle in October 2019 and she underwent EEGs to determine the problem.”

Throughout the pandemic, the family said they had heard nothing from the hospital, but noticed Emily’s vision was deteriorating badly.

Becky described seeing Emily struggling to see the computer screen and holding books very close to her face to decipher the words, as she was homeschooled when schools were closed.

In February 2021, Emily was declared severely visually impaired and she is now on the blind register.

The family were then referred to Great Ormond Street Hospital for genetic testing and Emily was diagnosed with Juvenile Batten Disease in January.

Emily, from Cottingtham, is a super Harry Potter fan and regularly asks her mum to call her Harry while she’s dressed in her own robe.



Emily also started to struggle with her speech, which she never had before.

Her family have described the youngster as a bubbly girl and have set up a Go Fund Me page in the hope of raising £20,000 to give her the fantastic memories she deserves.

Parents Becky and Ricky Atkin said: “Emily is the kindest, sweetest, sweetest, most loving girl you will ever meet.

“She has no bad bones in her body and her happy nature can’t help but make you smile. She loves to talk. We literally can’t stop her sometimes and she makes us laugh every day.

“Her strength and resilience over the past few years makes us beyond proud, she doesn’t let this disease get her down and always has a smile on her face.”

Becky said Emily still had lots of friends and had a great relationship with her older brother, Lewis.

Perhaps Emily’s most defining trait is that she is a huge Harry Potter fan and regularly asks her mother to call her “Harry” while she is dressed in her own robe and seated on a broomstick.

Becky said her daughter’s obsession grew after she visited Harry Potter Studios on her eighth birthday and was enchanted by all things wizarding.

The family hopes to use the donation money to take Emily to Universal Studios in Florida so she can experience the world of Harry Potter there and watch the cursed child in the West End before Emily can see no more.

Within four days of setting up the Go Fund Me page, the family have already received nearly 250 donations totaling £6,600.

They said they were overwhelmed by the generosity of friends and strangers.

“All I can say is thank you, and I can’t say how much it means to us,” Becky added.

“We set the goal really high, thinking of the United States, and we really didn’t think it would come any closer or that fast at all.

“We imagined it would be next year when we might think about booking the holiday, but it could be a lot sooner than that, which is great.”

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