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A ‘sweet and bubbly’ girl has suffered a tragic blow after being diagnosed with a rare terminal illness following a routine eye exam.

Emily Atkin, 10, has been diagnosed with Juvenile Batten Disease, a rare genetic condition that causes victims to lose sight, speech and mobility.

Having received the heartbreaking news on January 20 this year, Emily’s family have been urged to make lasting memories with her as there is no cure for her condition.

The life expectancy of children with Juvenile Batten Disease is as young as their teens, news that came as a terrible shock to Emily’s mother and father, Rebecca and Ricky Atkin.

Emily is a huge Harry Potter fan and hopes to go to Harry Potter World in Florida

The Atkins of Cottingham said: “Emily is the kindest, sweetest, sweetest and 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.”

The heartbreaking diagnosis came as a huge shock to Emily’s parents and older brother Lewis, as she had always been completely healthy, but the hospital has now advised her family to make as many memories with her as possible, before that his condition does not deteriorate. health further.

In light of this, the family have set up a Go Fund Me page, with a goal of £20,000, to give Emily the fantastic memories she deserves while they still can, according to Hull Live.

Becky revealed how Emily’s first sign of suffering from the disease came during a routine appointment with Specsaver in the summer of 2019.

The Atkin family with (dad) Ricky, Emily, (brother) Lewis and (mom) Becky
The Atkin family with (dad) Ricky, Emily, (brother) Lewis and (mom) Becky

Becky said: “Emily has been wearing glasses since she was four, but her vision was only on the edge 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 had heard nothing from the hospital, but noticed that Emily’s vision was deteriorating badly.

Becky describes 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.

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

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

In addition to having issues with her vision, Emily also struggles with her speech, which she had never had a problem with before.

Emily’s family describes her as a kind, sweet and bubbly girl.

Becky says Emily has always had lots of friends and has 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”, despite being dressed in her own robe and sitting on a broomstick.

Becky says Emily’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, as well as go watch the cursed child in the West End, before Emily can no longer see.

Within four days of setting up the Go Fund Me page, the family have already received 217 donations and nearly £6,000.

The family is overwhelmed by the generosity of friends and strangers.

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

“We set the goal really high, with going to America in mind, and we really didn’t think it would come any closer or so quickly 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.”

If you have been touched by Emily’s story and would like to donate, you can find the Go Fund Me page here.

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