Ashley Kurpiel is surviving the worst stage of a rare condition that turns muscles into bones.
The 37-year-old suffering from FOP, Fibrodysplasia Ossificans Progressive, has lost all control over herself and has become entirely immobile now.
The condition that hardly affects 1,000 people worldwide, gets worse with time, if not treated well.
Meet Ashley and her mom in the video below.
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Video credit: Rumble
Ashley who’s facing this disease since her birth still tries to remain positive. Speaking to Barcroft TV, she said: “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 needs to be cared for throughout the day as she is even unable to carry out her personal chores.
“FOP affects my life pretty much all day, every day,” said Ashley. “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.”
The unfortunate lady gets saddened many times due to her dependency on others. “It’s tough being an adult and not being able to take care of yourself,” she said.
“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 needed assistance throughout her life even when she was studying at school.
Though dealing with such an illness was really tough, she, fortunately, got a lot of support from her loving friends and her affectionate family members.
Her loving and caring mom, Carol, who is there for her every minute, 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.”
The 73-year-old added: “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 truly understands that it’s not only her who is suffering the tragedy, her family also feels the grief and hardships she is facing in her life.
“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,” said the ailing woman.
“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.”
Ashley also lost one of her arms when she was just three-year-old. She just had a lump near her shoulder but due to misdiagnosis, she ended up with an amputated arm.
“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,” said Ashley.
“We need to try and find a treatment and cure to stop this from happening.”
Ashley is currently running a group which she started in 2018 for people who’re surviving as amputees.
Explaining how beneficial the group project had proved for such people, Ashley 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.”
The courageous woman whose aim is to spread positivity as well as awareness about her rare disease, said: “It feels extremely wonderful helping others.
“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.”