By Nathalie Bonney @nathaliebonney
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Videographer / director: Gerrit Messersmith, Brian Gadt
Producer: Nathalie Bonney, James Thorne
Editor: James Thorne
At just 23-years-old Carli Henrotay’s mobility is already severely restricted: she can’t raise her arms above her head and uses a wheelchair to get around; while her jaw only opens a few millimetres.
Carli has Fibrodysplasia Ossificans Progressiva (FOP), which causes muscle and connective tissue to slowly change into bone, in effect growing a second skeleton.
Also known as the disease that 'turns people to stone', FOP has a life expectancy of 40 and there are currently only 800 people worldwide known to have the condition.
Carli told Barcroft TV: “FOP is a one-in-two million disease, although there is evidence that it looks a little more than that but the number publicised is one in two million and there are around 800 known cases in the world right now.
“FOP mostly affects me in a couple of different places; my jaw is locked and I have less than 2mm of opening so it makes it harder for me to eat or talk and project my voice.
“My shoulders and neck are also locked, which hinder me from doing my hair or driving. And my hip is also locked which is why I walk with a limp or use other mobility aids just because I can’t walk that long a distance.”
“FOP causes a lot of pain. I never know how to answer the question ‘on a scale of 1-10 what is your pain?’ because I live every day and every moment in pain. I am lucky that I have such a high pain tolerance.”
Before her diagnosis, Carli was an active child; her happy place was a swimming pool and she liked nothing more than to be outside running around, whether it was playing soccer or T ball. All of that changed though when doctors told Carli’s parents their daughter had a rare and progressive disease.
Cari said: “I was diagnosed with FOP at five and a half so I was lucky enough that I got that normal childhood. But at the same time I don’t remember life without FOP so I have all the memories of the normal childhood but without remembering what it was like to function like that.
“Had I been diagnosed probably even two years later I would have had more memory living without FOP but I feel very fortunate that I still got that normal childhood, but I am also not resentful of the fact of not living without it.”
The disease, and further bone growth, can be triggered by anything as small as a papercut. In Carli’s case it came after a fall.
She said: “I took a really bad fall in 2001 off a back of a bar stool and had a lot of swelling and I was in a lot of pain.
We went to the doctor and he didn’t really know what the swelling was so he ordered a biopsy.”
But before the biopsy, Carli’s mum Lori took Carli to their regular physician Dr. Martin Schmidt. Unbelievably he had come across another patient with FOP two years previously and recognised the symptoms.
“He looked at the swelling and immediately knew that he had to take my socks of and look at my big toes.”
Carli’s big toes are shorter than her other toes, a hallmark symptom of FOP.
After the diagnosis. rather than wrap Carli up in bubble wrap, Lori and husband Pete encouraged their daughter to live as active a life as possible.
Carli said: “Instead of playing soccer with a league maybe I could kick the ball to the side gently; we always were very good about educating my class and my friends.
“Even though I was different I was just like them so I was always treated special, so like in gym class if they were running the mile; I would get to pull a friend aside and we would jump rope together.”
An A-grade student who has completed college, seeing herself as special rather than incapable, has allowed Carli to maintain a positive attitude.
She said: “When I was seven my jaw locked, which was scariest for my parents. I immediately adapted and didn’t really think of it otherwise but I know my parents had freaked out because that isn’t something that normally goes so young.”
“I definitely get sad at what FOP has taken from my life but it is not something that I try to dwell on because it is not something that I can change.
“It is definitely disappointing that I can’t play sports or drive a car or do this, that or the other thing but I always try to look on the positive side and remember what I still have and I am thankful for that.”
Although Carli needs help to do everything from brush her hair to put her shoes on, she is determined to be as independent as possible.
She had surgery to remove her back teeth so that she is still able to eat by forking food to the back of her mouth; and to stand Carli adopts a flamingo-esque pose that enables her to look at who she is talking to. And recently Carli moved in with her boyfriend of six years (they met in middle school) Billy.
She said: “I am excited to get in my new home and see where my independence can take me but it also is a double edged sword because I know it will hinder me as well.”
“I want people to understand that disability isn’t the whole part of me even though you can see it. You need to see more than the wheel chair and just see me as a person before you judge me for the disability.”