Little Hero – Amelie

31 Aug 2018, 3:46 p.m.

Amelia, a Little Hero at GOSH

Thirteen-year-old Amelie was diagnosed with juvenile idiopathic arthritis (JIA), a rare disease that affects an estimated 12,000 children in the UK, at the age of 18 months old, it causes her joints to swell and stiffen.

JIA more aggressive than arthritis in adults, and the pain in children’s hips and knees can stop them walking.

The drugs used to treat Amelie's JIA means she feels constantly sick and tired, and so often misses school.

Research continues at GOSH, where more patients with JIA are seen than anywhere else worldwide.

Researchers supported by GOSH Charity are on the brink of finding new, kinder treatments for the disease to give more children back their childhood.

Amelie has juvenile idiopathic arthritis (JIA), a rare disease that affects an estimated 12,000 children in the UK, causing their joints to swell and stiffen.

It’s more aggressive than arthritis in adults, and the pain in children’s hips and knees can stop them walking.

13-year-old Amelie is under the care of several specialist teams at Great Ormond Street Hospital who are all working together to help treat this debilitating disease, with the hope that she will soon be mobile enough to take a walk with her family and fulfill her dream of becoming a surgeon.

Amelie as a child 

Amelie was diagnosed with JIA at 18 months old.

"When she was a baby she just never slept and I couldn't understand, no matter what I did, why she wouldn't sleep," says her mum, Caroline.

"Now when I think about it she was already showing signs of having JIA."

Amelie and play worker at GOSH

A rare condition

Because there is no known cause of the type of arthritis Amelie has, it can be difficult to find an effective treatment.

“Amelie is in that most severe group where we often find it very difficult to control the joint disease,” says Clarissa Pilkington, Amelie's consultant.

“In Amelie it’s affected both ankles and quite a few of her other joints over time, and it has also affected her jaw joints. But her main problem has been in her ankles.”

Research continues at GOSH, where more patients with JIA are seen than anywhere else worldwide.

Researchers supported by GOSH Charity are on the brink of finding new, kinder treatments for the disease to give more children back their childhood.

"I am so proud of how brave she is," says Caroline.

"It gets progressively worse year on year. One of her hands is smaller than the other, one of her feet is smaller than the other and one of her legs is shorter. It's incredibly disabling.

"Her joints are swollen and have become eroded, especially her ankle, which makes it incredibly hard to be mobile and walking has become nigh on impossible."

Amelie and her mum at GOSH

Missing out 

The drugs used to treat Amelie's JIA means she feels constantly sick and tired, and so often misses school.

“I am at hospital at least once a week but usually it’s more with physio and other appointments,” says Amelie.

"Thankfully there is a school at GOSH which means when we are in hospital for physio or drug infusions, she can attend classes there," says Caroline.

When Amelie is well enough to go to school, there are some things she isn't able to do.

"She can struggle to get from one class to another and is unable to take part in any sporting activity. She doesn't know what it is to play netball, to play hockey, to be part of a team really, to go to birthday parties, to socialise with friends," says Caroline.

“I really wish that I could go out and walk with Buster because I can’t really walk very far without pain,” adds Amelie.

"Her dream is to come out and be part of our daily routine," adds Caroline.

Despite what she has been through and the pain she is in, Amelie is always smiling.

"She makes me the proudest mum in the world," says Caroline. "When she was born she took my entire heart and she continues to do that and I just marvel at her.

"She is a practical joker, she is quite quirky, very sensitive, very kind and Amelie is always lending support to everyone else but never asks for support for herself." 
Amelie says her mum worries a lot about her.

“She is a good mum, we get on very well,” she said. “We like to play games and walk the dog and we like cooking as well. We literally do everything together. She helps me when I’m struggling like if I find it hard to walk.”

Amelia, mum and Paul O'Grady

Support from GOSH 

Amelie has spent time at many hospitals in her life, but Caroline thinks GOSH is unique.

"GOSH have been incredible. I don't know what I'd do without the nurses on Pelican Ward, they are kind and caring," she says.

"They have supported us both through tears, made us laugh and entertained through the hours we spend at hospital several days a week.

"They provide support in so many ways. They have arranged therapy for her which has been a huge help, especially when she is struggling with pain."

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