By Danny Baggott @DAN_BAGGIE
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Videographer / director: Michael Catron
Producer: Danny Baggott, Ruby Coote
Editor: Helen Mckee
Ashley, 37, was born with Fibrodysplasia ossificans progressiva (FOP).
Affecting less than 1,000 people worldwide, the condition slowly gets worse over time and Ashley’s case has become so severe, she has now lost control over her body.
Despite the inevitable hardship this has caused, Ashley remains positive about her life so far and her future.
Ashley told Barcroft TV: “I know, even as an adult, FOP can take what little mobility you have left.
“But I don’t dwell on that. It’s going to happen whether I want it to or not.
“I’ve been living this great life for 37 years and this ride isn’t over yet. Whatever the world can throw at me I’ll take on.”
Ashley’s day to day life is heavily impacted, relying on 24/7 care.
She said: “FOP affects my life pretty much all day, every day.
“I cannot dress myself, I can’t bake myself, I can’t do my hair, I need help in the kitchen getting food because I can’t reach things.
“I’m pretty much wheelchair bound or bed bound, I need help with everyday life.
“It’s tough being an adult and not being able to take care of yourself.
“Four years ago I was featured on (Barcroft TV’s) Born Different. Back then I was walking, I was more independent and more mobile.
“I have now lost all mobility in my body.”
Ashley has required assistance throughout her life – even in her childhood years at school.
But thankfully, she’s always had a loving group of close friends and family around her.
None more so than her mother, Carol, who has been her main source of care.
Carol, 73, said: “She has to have someone with her constantly, 24/7.
“Ashley’s condition has affected my life – probably everyone in the family’s life if you will.
“There really is no walking for her. If there was an emergency, she would never be able to escape on her own.
“Using the lavatory, using tools for make-up – we have to get those out and set up. She can’t do her own laundry.
“Ashley has coped with her condition, throughout the years, remarkably well.
“We’re very proud of her.”
Ashley added: “I say I feel like I’m a burden, I know I’m not a burden on my family – but I can’t survive without the help.
“I’m very blessed to have the family and friends that I do, that love me, take care of me and support me.
“It’s made me the woman that I am today.”
When Ashley was just three years old, she had a lump on her back and was misdiagnosed by doctors.
This resulted in her right arm being amputated – something she has also had to learn to live with.
“I’m the most exacerbated, most misdiagnosed case out there and we need to find those other people out there with this condition who don’t even know,” Ashley said.
“We need to try and find a treatment and cure to stop this from happening.”
In 2018, Ashley started a communal group for people who live with amputees to get together and discuss their experiences.
She said: “We now have roughly 23 active members.
“I started this group because I grew up this way – amputee life is just my normal. But these people that go through it later in life need that support.
“It’s been amazing, we have some great fun.”
And Ashley is keen to continue spreading her positivity and raising awareness for FOP.
“It feels extremely wonderful helping others,” she said.
“They need to remember it’s not the end of the world.
“They can live and survive and be happy in life despite what FOP does to them.”