The family of a ‘sweet and bubbly’ 10-year-old girl have been told to create lasting memories with her after she was tragically diagnosed with a rare terminal illness after a routine eye exam.
Emily Atkin, from Cottingham, was diagnosed with Juvenile Batten disease – a rare genetic condition which causes loss of sight, speech and mobility over time – on January 20 this year.
The age expectancy of children with this disease does not exceed their adolescence and does not yet have a cure.
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Emily’s mum and dad, Rebecca 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.”
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.
Becky revealed how Emily’s first sign of suffering from the disease came during a routine appointment with Specsaver in the summer of 2019.
Becky said: “Emily has had 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 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.
Along with having issues with her vision, Emily also struggles with her speech, which she had never had a problem with before.
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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 almost £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 enough how much it means to us.
“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.”
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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