When Carli Henrotay, 27, was just five years old, she was diagnosed with fibrodysplasia ossificans progressiva (FOP) – a rare genetic connective tissue disorder which means she is effectively ‘growing a second skeleton’.
When she was seven, her jaw became ‘locked’ and, a few years later, Carli began using a wheelchair after a series of falls and injuries meant she she lost mobility in her left knee and hip.
Now, Carli can’t drive or get out of bed without assistance and she constantly feels pain in her body – but that doesn’t stop her from dreaming big for the future.
She’s set her sights on finding her ‘forever home,’ starting a family, swimming, and growing her own brand as a disability influencer.
‘Not having a life plan is very difficult, but I think it’s important to live your life to the best of your ability,’ Carli, from Missouri, said.
‘I can always dwell on the fact that I can’t walk, or I can’t do normal things, but that will take away from the life I do have and the things I can do.’
FOP is a very rare genetic connective tissue disorder, which causes the body’s skeletal muscles and soft connective tissues to undergo a metamorphosis, essentially a transformation into bone.
Accidents and invasive medical procedures can trigger the disorder. For Carli, doctors discovered she had FOP when she fell backwards off a chair at five-years-old.
‘When I was first diagnosed, at five, it was my back that was affected,’ she explained.
‘I couldn’t bend at the waist; my whole back was a sheet of bone – it has been ever since – and then I lost my ability to move my shoulders and raise my hands over my head.
‘Something little happens, and it causes a whole domino effect.’
Then, at seven, Carli’s jaw locked ‘suddenly’. Thankfully, an operation to remove her wisdom teeth and four additional molars at the age of 22 created ‘holes in the back of (her) mouth’, which allow her to eat solid foods and take medicine, saving her from a ‘miserable’ liquid diet.
‘With my disease, I can’t control a lot of things, but I can control what I eat,’ she said.
‘I feel like I go through enough suffering and pain, and I deserve the ice cream at the end of the day.’
Since the age of 20, Carli has strived to live as independently as possible, with the help of her service dog Patience.
‘She is everything I could have asked for in a second dog and she went through sophomore to senior year of college with me; she’s very important,’ Carli said.
‘She helps me with tasks like picking things up, which is super helpful, and she can open and close drawers, which is her favourite thing to do still to this day.
‘She can push automatic door buttons and she knows over 40 commands in total, but for me, it’s also about them taking the focus of my disability away from me.’
Carlie now lives with her boyfriend, Billy Schmitt, 27, who works in IT.
They moved in after Carli finished college, just months before she had a fall that resulted in her needing a wheelchair.
At 24, it was difficult for Carli to process.
‘I went from being able to walk to I can’t get myself out of bed… I can’t get myself off the couch, I struggle to get myself out of my wheelchair; it was really challenging,’ she said.
Now, she is focused on her health and wellbeing and wants to help raise more awareness of FOP.
‘There are a lot of negatives in this life and in this world, especially having a crippling, progressive disease, but I try to focus on the positives,’ she said.
‘I just want to show up and do the best that I can every day.’
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