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The Brave Hull Girl who has Battled One in 40 million Disease Nearly All her Life - But Hasn't Let that Stop Her

3.2 from 6 votes
Thursday, July 19, 2018

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HULL, England - A young girl from Hull that has battled with an incredibly rare disease has been recognised for her bravery.

Five-year-old Evie Hewitt began the fight against juvenile xanthogranuloma (JXG) when she was aged just two.

The condition affected her eyes and skin, along with the pituitary and pineal glands of her brain. She was left blind in one eye, and at serious risk of losing the sight in her other eye and a life long steroid dependency and diabetes insipidus.

It took time to initially diagnose poorly Evie, as her condition only affects every one in 40 million people.

Her parents noticed that there was a squint in her eye, which resulted in multiple hospital trips and stays at Cambridge and Birmingham, where little Evie had examinations under anaesthetic and a biopsy before being diagnosed with JXG.

As a result, Evie spent the following two years of her life in and out of hospitals for countless operations and treatments and endured a year of chemotherapy which failed to stall the disease.

After advice from an expert in Texas, Evie started a new special kind of chemo granted through the NHS, but it was very aggressive and left her very ill.

Evie has been 'so brave'

Brave Evie is the first known person in England that has had clofarabine (chemotherapy) treatment for JXG. Her new treatment also lasted a year and it was a terrifying time for Evie and all of her family, but for such a little girl, her courage and bravery astounded them all.

Thankfully, the process worked and the JXG went in to remission when Evie was four. However, she still has to make frequent visits to the hospital, and an ordinary illness for most children will also leave her extremely poorly and in need of rushing to A&E.

"As a result of the JXG, Evie has been left with no sight in one of her eyes, partial sight in her other eye, and conditions which will require medication and maintenance for the rest of her life," said Jill Spriggs, Evie's aunt.

"She still has regular hospital appointments for tests and investigations which are often carried out under anaesthetic.

"Despite all of this, Evie is now attending school and is enjoying a full to the brim life. She never complains, and takes everything in her stride. She even takes horse riding lessons now which is something that we never thought we would see happen."

Evie spent much of her time away from home in hospital across Leeds and Birmingham and missed out on so many normal childhood things due to her illness. Evie's second, third and fourth birthdays were either spent in a hospital bed or at home too unwell to celebrate, but she remained strong through it all.

Mrs Spriggs has nominated her for Hull Live's Heart Award.

"Throughout the whole of her battle she has been unbelievably brave, and has always remained a happy and loving little girl.

"I'm very proud of her for how she has dealt with all of the hard times that she's had to endure over her short years, and of how well she continues to adapt to her visual challenges and other conditions.

"She now wears glasses to help her remaining eye, and has to wear a special hard shell eye shield every day which is very uncomfortable in order to help her face to grow normally and has medication every day which her life depends upon."

Heart Award nomination
Little Evie has been through so much in her short time - and it's her fearlessness which has seen her nominated for a Heart Award.

Hull Live's annual awards celebrate the achievements of the region's unsung heroes, honouring people who go the extra mile for the good of others, and the courageous and inspirational people who battle on despite the odds and never expect to be thanked.

And Evie has been nominated in the Child of Courage category, sponsored by Willerby, in recognition of her determination and strength.

Evie still faces being rushed into hospital for emergency steroid treatment if she ever gets a sickness bug or other normal childhood illnesses, yet she still smiles constantly, never complains, and thoroughly lives her little life to the full.

"I believe that she is so deserving of an award for the truly amazing a little girl that she is.

Mum-of-two Sarah Thomas, says her daughter Evie will be thrilled to hear about her nomination.

"Growing up has been really tough for Evie - she's been in and out of different hospitals, and in a lot of pain all the time with the chemo.

"The treatment made her really pale and meant that she couldn't do anything, but she kept strong and never complained.

"Now she is in remission but has to take medication three times a day and also has regular check ups in the hospital for her prosthetic lens in her eye, but just gets on with it.

"She is very independent and confident and wants to do a lot of things for herself.

"Evie is just an absolute diva - she knows she has got everyone wrapped around her finger and she is so sassy, she's great.

"She'll be so excited to hear about her award nomination as she absolutely loves medals."

Blundell's Corner
Beverley Road

Telephone: 01482 315194

Author: Anna Riley
Source: HullLive
3.2 from 6 votes
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