‘My daughter just wants to be a normal child, but she can’t move without being in pain’

The parents of an East Yorkshire girl who is in pain every time she moves hope pioneering treatment could save her life.

Amelija Zvinyte, 7, was diagnosed with Mucolipidosis after she began suffering with chronic back pain and struggled to grow. After a number of scans and blood tests, doctors confirmed that she had the rare, inherited disorder.

It means that Amelija, from Pocklington, cannot walk or bend down without being in pain and can only get about by use of a pram. Now, her family are fundraising with others from around the world to help towards the cost of a pioneering gene therapy that they hope might stop the condition from worsening.


Although she can never be cured, her mum Diana is hoping that the treatment can go some way to helping Amelija cope with her illness. Despite remaining as positive as they can, the situation is one that has had a profound effect on the whole family.

Diana said: “Amelija had no problems at birth, but when she turned four she started having back pains. There was one instance where she became hysterical and we had to rush her to hospital. However, they couldn’t see anything and thought it may have been a trapped nerve.”

Amelija with her brothers Daniel, 10, and Lucas, 3(Image: Submitted Image)

At the end of last year, Diana noticed that Amelija was unable to raise her arms above her shoulders and that she was much smaller than her classmates. After taking her back to hospital, she was sent to York Paediatrics in January this year for an MRI and blood tests.

In May, the family were given the devastating news. “They told us her neck and back vertebrae were abnormal, it was if they had been squeezed together. When they told us I just sat and cried.”

Since the diagnosis, the family have travelled all over the country for further appointments to see what can be done for Amelija. Despite her condition, the young girl remains upbeat and smiley.

“She is always happy and you wouldn’t know anything was wrong.” said Diana. “However, she is always in pain and can’t bend down or even walk.

“We have to wheel her round in a pram, but we are hoping to get a self-propelled wheelchair in time so she can move about by herself. I just feel so bad and I keep crying when I see her struggling, it’s heartbreaking.”

In an attempt to help stop her condition worsening, Diana is helping fundraise for pioneering gene therapy with other families across the globe whose children are suffering from the illness. She has regular meetings with with parents in countries such as America and Norway who are all trying to do their bit so they can make their dreams a reality.

Despite her condition Amelija is always happy and smiley(Image: Submitted Image)

The families are working with the American charity Cure Muscolipidosis, Diane and the others are hoping to raise enough money so that work can begin on producing a treatment that will hopefully help their children live with the condition.

“We’re doing all we can to get this into production. We don’t know how long Amelija has, so the sooner we can get her some help the better. On top of that, the only other option for her is spinal surgery, but it’s very dangerous for someone as young as she is.”

Diana just wants Amelija to have the normal life that any other kid would. “She’s always asking to do gymnastics with her friends, but of course she can’t join in and she’s not allowed to go on a trampoline or anything like that. I just wish I could have it instead of her.

“We know it could take two or three years before the therapy is available for people like Amelija, but the sooner we get the money needed the better.” The family have also set up a Go Fund Me page to help raise funds, which you can donate to by clicking here.

Leave a Comment