By Rafaela Kuznec @RafaelaKuznec
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Videographer / director: Marcus Hessenberg
Producer: Rafaela Kuznec, Ruby Coote
Editor: Tom Buckman
Ellie Darby-Prangnell, from Essex, UK, suffers from a genetic condition called Spinal Muscular Atrophy (SMA) that makes the muscles weaker and causes problems with movement.
Ellie, 18, told Barcroft TV: “When I was born there were no signs of SMA.
“But as I started to grow my mum noticed that there was something wrong because I couldn’t walk.
“Over time I have lost a lot of strength.”
There are several types of SMA, which start at different ages.
Ellie suffers from SMA type 2 that appears in babies who are 7-18 months old.
Ellie’s mother, Kim Darby, explained: “About the age of 13 months Ellie used to stand up and then all of the sudden her knee used to start to buckle, gradually over the years it had an impact on her back and her back has collapsed down into scoliosis.
“She’s lost hand strength, she has lost her head control, it's made harder for her to breath and eat.
“But she gets on with it, she rolls with it, that’s what we do.”
Ellie added: “I want people to know I’m just the same as everyone else, just because I might need to have people helping me to dress or put my shoes on, but it doesn’t mean that I’m that much different from anyone else really.”
Ellie is very passionate about beauty and fashion and enjoys photography and art.
She has started her own YouTube channel, on her vlog she sassily talks about her condition and shares makeup and beauty tutorials.
Ellie said: “I can do my makeup myself which is something that I love and I am very lucky to still be able to do it.
“I am not able to do my own foundation on the skin, I can do things like bronzer and concealer but anything that involves reaching the whole of my face I am not able to do.
“I have gradually lost that strength so luckily all of my PAs are very good at makeup which is definitely a part of the job.”
Despite her condition which limits her movements and requires consistent care, the 18-year-old has a part-time job at a clothing shop, volunteers for an autism charity and is now planning to launch her own fashion brand.
Ellie says that her brand is aimed into bringing more diversity into the fashion industry and designed for everyone with or without a disability.
She also hopes to make her brand sustainable.
Ellie said: “I went to college and I studied fashion for two years and I absolutely loved it.
“When I was about 14, I decided that it would be quite cool to start my own brand.
“I did some work experience at Diesel HQ and we were chatting about disability in the fashion industry and it kind of sparked from there.”
The clothing brand - which she is going to launch this summer - will be called ‘Melting Pot Threads’.
Since her time in college, Ellie became fascinated about the idea of bringing more diversity in the fashion industry and said: “My brand is focused including everyone, making really colourful clothes.
“I know from personal experiences it’s so hard to get clothes that fit you and would look good.
“I would like to create a range of clothes for people in wheelchairs because things for disabled people aren’t just made the same.”
According to Ellie, her condition might progress in the future, however, the vlogger said: “I don’t really think about the future too much.
“Kind of just whatever will be, will be.
“It's how I see it, it’s the way life is, just got to live your best life.”
Even though Ellie said she hasn’t experienced any bullying face to face, she has been excluded amongst her peers or ignored.
She said: “I think the hardest part isn’t necessarily the actual condition.
“I think it's such a visual thing - I can't hide that I have a disability.
“It's just out there.
“It’s quite hard sometimes to be in new situations and surroundings and you are ultimately like ‘Here I am, this is me’ and people have to deal with it”
She added: “My confidence has definitely grown a lot in the past two years.
“I’ve definitely come a long way, I still think I’ve got a long way to go but I’m getting there.”