Tragic diagnosis as girl told of rare terminal disease after routine eye test

A 'candy and bubbly' lady has been dealt a tragic blow after being identified with a uncommon terminal sickness following a routine eye check-up.

Emily Atkin, 10, was instructed she has Juvenile Batten Illness, which is a uncommon genetic situation that causes victims to lose their sight, speech and mobility.

Having been given the shattering information on January 20 this 12 months, the household of Emily have been instructed to make lasting recollections along with her as their is not any treatment for her situation.

The life expectancy of kids with Juvenile Batten Illness is not past their teenage years, information which got here as a horrible shock to Emily's mum and pa Rebecca and Ricky Atkin.

Emily is a huge fan of Harry Potter and hopes to go to the Harry Potter World in Florida
Emily is a big fan of Harry Potter and hopes to go to the Harry Potter World in Florida (Picture: Becky Atkin)

The Atkin's from Cottingham, mentioned: “Emily is the kindest, sweetest, most mild and loving lady that you can ever meet.

“She doesn't have a nasty bone in her physique and her pleased nature can’t assist however make you smile. She loves to speak - we actually can’t cease her typically - and he or she retains us laughing each day.

“Her energy and resilience the previous couple of years make us past proud, she doesn’t let this illness get her down and all the time has a smile on her face.”

The heartbreaking analysis got here as an enormous shock to Emily’s mother and father and older brother Lewis, as she had all the time been completely wholesome, however her household have now been suggested by the hospital to make as many recollections along with her as they'll, earlier than her situation deteriorates her well being additional.

In mild of this, the household have arrange a Go Fund Me web page, with a goal of £20,000, to present Emily the implausible recollections she deserves, whereas they nonetheless can, in line with Hull Dwell.

Becky revealed how the primary signal of Emily having the situation got here throughout a routine Specsaver’s appointment in the summertime of 2019.

The Atkin family with (dad) Ricky, Emily, (brother) Lewis , and (mum) Becky
The Atkin household with (dad) Ricky, Emily, (brother) Lewis , and (mum) Becky (Picture: Becky Atkin)

Becky mentioned: “Emily has worn glasses since she was 4, however her imaginative and prescient solely sat on the borderline of needing to put on them.

“In the course of the appointment, upon taking photos of her eyes, the optician seen that a part of Emily’s eye was flat, the place it will often be curved and referred her to Hull Royal Infirmary.

“As a result of needing a specialist, Emily was referred to a hospital in Newcastle in October 2019, and he or she underwent EEGs to find out the problem.”

All through the pandemic, the household had heard nothing again from the hospital, however seen Emily’s imaginative and prescient was deteriorating so much.

Becky describes seeing Emily struggling to see the pc display screen and holding books very near her face to make out the phrases, as she was being homeschooled when colleges had been closed.

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

The Atkin household had been then referred to Nice Ormond Road Hospital for genetic testing, and in January this 12 months, Emily was identified with Juvenile Batten illness.

In addition to having points along with her imaginative and prescient, Emily can also be struggling along with her speech, which she has beforehand by no means had an issue with.

Emily’s household describe her as a sort, candy and bubbly lady.

Becky says that Emily all the time had plenty of buddies, and he or she has a terrific relationship along with her older brother, Lewis.

Maybe essentially the most defining trait Emily has, is that she is a Harry Potter super-fan, and routinely asks her mum to name her “Harry”, whereas wearing her very personal gown and sitting on a broomstick.

Becky says that Emily’s obsession grew after she visited the Harry Potter Studios on her eighth birthday, and was enchanted by all issues wizard.

The household are hoping to make use of the donation cash to take Emily to Common Studios in Florida, in order that she will expertise the Harry Potter World there, in addition to going to look at the Cursed Little one on the West Finish, earlier than Emily can not see.

Inside 4 days of the Go Fund Me web page being arrange, the household have already acquired 217 donations and nearly £6000.

The household are blown away by the generosity of buddies and strangers.

Becky mentioned: “All I can say is thanks, and I can’t say how a lot this implies to us.

“We set the goal actually excessive, with going to America in thoughts, and actually didn’t suppose it will come shut or this rapidly in any respect.

“We imagined it will be subsequent 12 months that we may take into consideration reserving the vacation, however it could be so much earlier than that, which is nice.”

If in case you have been touched by Emily’s story and want to donate, yow will discover the Go Fund Me web page right here.

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