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Updated 25 January 2019

Wheelchair-bound girl struggles to scratch an itch and move because of rare condition

This British teenager isn’t allowing a progressive muscle weakness to stop her from living life to the fullest.

This British teenager isn’t allowing a progressive muscle weakness to stop her from living life to the fullest.

Thirteen-year-old Sophie Anderson from Surrey, UK, was first diagnosed with spinal muscular atrophy (SMA) – a rare neuromuscular disorder – when she was one year old, after her parents, Veronika and Richard, noticed that she only cried when someone tried to make her stand.

When her younger sister, Grace (now 11), started to hit her milestones quicker than she did, doctors ran blood tests and a muscle biopsy that confirmed she had a type of SMA.

“My family were aware something was wrong quite soon after I was born. I never cried, unless someone tried to stand me up,” Sophie said.

“Then my younger sister started to progress quicker than I was, so my parents started to look into it.

“Everyone told them I might just start walking a bit late, but then, after many blood tests, debates, meetings and a misdiagnosis, my faulty genes were eventually confirmed after a muscle biopsy.”

Sophie’s rare condition means she’s unable to walk, stand, sit unaided, lift her arms and hold up her head. She also gets fatigued quickly.

“SMA pretty much affects everything I do such as getting in and out of bed because I can’t sit up by myself or move my legs, which makes it pretty impossible to get dressed and undressed.

“Going on public transport because most buses, trains and taxis don’t have ramps, which makes it difficult to get on.

“Talking, eating and swallowing and holding up my head because if I’ve had a particularly long day, I get very fatigued, and that sometimes makes it difficult for me to use my neck, face and throat muscles.

“It affects so much more than you think it would though. Even the little things such as pouring yourself a drink, scratching that itch, hugging your friend, decorating your house for Christmas, cycling to school, being able to move if you’re in pain.

“People always take these things for granted, and they don’t realise that there are lots of people around the world who’d give anything to have the same experiences,” she said.

The youngster is in constant pain and has had more than 350 hospital appointments, 100 X-rays and eight surgeries.

It wasn’t until Sophie started school that she realised that not everyone was accepting of her disability. Her peers would often poke fun at her which chipped away at her confidence.

This changed when she was 11 years old and moved to a school for disabled children, where she made loads of friends who understood what she was experiencing.

Last year the teen started her blog, @wheelchair_dontcare, to inspire others to follow their dreams no matter their circumstances.

Sophie credits her naturally positive outlook on life for helping her manage her disability and wishes that she never spent time worrying about what other people think of her.

“I started my blog to spread awareness about different disabilities, as well as my own, to share my story and to hopefully inspire people to follow their dreams, no matter what obstacles are in the way, whether it’s a disability, low self-esteem, or anything,” Sophie said.

“Never worry about what others think, your life is yours – nobody else’s – so live it how you want to, not how you think others want you to.

“Remember the saying, ‘those who mind, don’t matter, and those who matter, don’t mind’ – that’s something I’ve recently tried to live by. And I think it would be so great for others to think about that once in a while too.”

Source: Magazine Features

 
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