But today we’re launching a story about Jasmin Floyd, and we guarantee that she’s the bravest young woman you’ll meet. You’ll never catch her hiding from life. Regardless of the day she’s having, she’s the type to always find a positive angle and embrace the day for all it is worth.
Jasmin is living with FOP
Which is Fibrodysplasia Ossificans Progressiva, but don’t mind the long medical terminology. What you should know about this genetic disease is that it’s incredibly debilitating and unbelievably rare. Approximately one in two million patients are diagnosed with it, so this means that only 300 people in the US and 800 worldwide have confirmed cases of the disease.
With FOP, your body progressively starts forming a second skeleton. Your muscles turn to bone. Your tendons, your ligaments, your connective tissues, they all eventually transition to bone. Over time, your mobility becomes limited; your joints lock up and you begin to feel trapped within your own body. Currently, Jasmin’s jaw has locked up so she can only open her mouth a centimeter wide, and she has to turn her whole body to look to her left.
But we’re not here today to tell you about FOP or how Jasmin copes in her daily routine. That’s already been written about in CNN, the Washington Post, Good Housekeeping, and others. You can also read about her personal journey in her blog (which we highly recommend!).
We know that Jasmin is more than her diagnosis, she’s a hero. So today we’re going to share her secrets for staying positive in the wake of tremendous hardship, and to find out what elevates mere mortals like us to become champions like Jasmin. Her story invites us all to be a little bit more like her, to live life as fully as she does, and to embrace our daily struggles with abandon because there is always, always, something to be thankful for.
Jasmin’s story begins in Wisconsin.
She grew up here for the first five years of her life, but her family moved away to Connecticut after her father accepted a job offer. But it was only a couple of months after this move that she began to experience strange, unnerving symptoms like her neck becoming unusually, uncomfortably stiff. While this symptom wouldn’t normally warrant any concern, her neck eventually looked abnormally positioned.
It was this symptom, of her neck becoming noticeably and intrusively stiff, that prompted her family to see a doctor. Jasmin was only five when she was diagnosed with FOP.
She doesn’t remember the exact moment when she heard the diagnosis
But she does remember that her limitations only increased as she got older. It was the little things, like not being able to play with the other kids on the playground or having to sit out in gym class, that made her feel different. To this day, Jasmin says that finding people who actually understand her is the hardest challenge that she faces when she feels different.
But it’s also the little things that she finds the joy in. It’s those sweet Summer days spent walking outside, or watching Netflix and keeping in touch with friends that bring her the most happiness. During the Winter and Spring, Jasmin prefers to stay inside because the chances of her catching an illness increase, but that doesn’t matter. When the weather warms up, you can see her traveling or visiting one of the multitude of events that she’s invited to.
In fact, it’s traveling that she loves doing the most.
Jasmin makes it a point “to have certain experiences while I’m able to, like going to Disney World for my birthday” because she’s not sure when the next big flare up will occur that could potentially immobilize her. In fact, when she turned 19 she finally made that trip to Disney World with her best friend, and she had the time of her life!
But her favorite place to visit is San Diego, “there’s just something about the environment there that is just so fun and relaxing. It’s totally different than Connecticut, and it’s such a long travel day, but I love it!”
If she’s not traveling, she’s writing or public speaking. Or in some cases, it’s all three! She says its “so much fun to navigate different environments like being in a hotel room by myself and having to wake up early, get picked up by a taxi, and make it to an event! It makes me feel like a regular person.”
Last year, Jasmin was interviewed by CNN
Even though she was incredibly nervous about it, she describes the entire experience as one that she feels her “whole life had been leading up to.”
She laughs about that time now. After the producers came and left, after she conquered her worries about being on camera, she remembers constantly wondering about how the story would turn out. But her mom always told her that she couldn’t do anything about it now and she’d just have to pray it would all be fine.
And her mom was right. Since the story’s launch, Jasmin has seen an outpouring of love and support from all over the world. This is what she truly loves, seeing all of the kind comments and interacting with others who care about her.
So what does her support system look like?
Jasmin’s love for the Hole in the Wall Gang Camp (HITW) founded by Paul Newman in Ashford, Connecticut, became very apparent during our interview. She describes it as a week-long overnight camp that she attended every Summer as a child, and she’s so fond of it because no other camp was able to support her unique needs at the time. In fact, she’s still affiliated with them and volunteers there regularly.
After she aged out of the HITW, another organization called Next Step, based out of Cambridge, Massachusetts, helped her grow into adulthood. This one helps support young adults with life-threatening illnesses transition to becoming adults because “it’s so hard to navigate the real world and have a chronic illness.”
Jasmin continues, “When you’re a kid, people rally around you and help you out. But once when you’re an adult, people tend to assume that you know what you’re doing and so they don’t always give you as much support. But when you have a chronic illness, you still need the extra help and support with many things that may be easier for other people. I’m always looking forward to when I get to see everyone there again.”
But other than these camps, it’s her parents and her entire family that she considers to be part of her strong support system. She says that it’s her parents that have made sacrifices and witnessed everything that she’s gone through along the way, and she’s beyond thankful for everything that they have done for her.
Family doesn’t always have to be genetic, either. Jasmin also credits the International FOP Association (IFOPA) as a major part of her support system, referring to them as “an FOP family – a community of families, adults with FOP, caregivers, doctors, and researchers!”
The average lifespan for those diagnosed with FOP is around 45 years-old.
While there have been other individuals with FOP that have lived longer, quality of life becomes even more limited with the disease’s progression. FOP is completely unpredictable, but she tries not to dwell on that. Instead, she says this makes her “more motivated to embrace every day with a positive attitude” before she becomes more limited.
So what brings her joy?
How does she find this inner happiness? Jasmin self describes it as a “layer of joy” within her that helps her to feel happy about life, no matter the circumstances.
Jasmin says that people tend to talk about finding happiness like it’s some impossible thing, that it’s an unattainable part of life. But for her, happiness starts within. It’s not the end result, it’s a continuous feeling that she cultivates with every moment of her day whether it’s when her cat curls up in her lap to fully appreciating every moment like it is not going to happen again.
“With my limited mobility and my progression of FOP, I know that anything can happen to me at any time. So it’s always in the back of my mind, to appreciate my friendships and the events that I go to. I know that it’s not always going to be that way, and it helps me to keep that positive perspective on my life.”
She also credits this continuous happiness to her faith in God, crediting Christianity for helping her “make sense of who I am and what life is all about.” She says that when she couldn’t properly explain to her family how she was feeling, it was Christian music that really spoke to her and put her at peace about all of the challenges that she was overcoming.
Although she’s unable to attend church now, everyone there remains in close connection to her and offers support whenever she or her family needs it. Her faith remains a constant source of comfort, and she believes that “the more I focus on my faith and my relationship with God, the better I feel about where my life is headed. I tend to compare myself to other people less, and I have less stress with an overall feeling of contentment. I feel more at peace. When I’m having pain, this peace is what really helps me.”
At the end of our interview, we asked Jasmin two questions, what do you want others to know about FOP, and what do you want others to know about you? Needless to say, we were floored with her response, and no one could say it better than she did:
“Though FOP is daunting and scary at times, it doesn’t change who I am. Nor does it even begin to define those who have it. I want others to know that people with FOP or other disabilities can still have fulfilling lives despite their diagnosis. We’re continuously adapting in an effort to maintain who we are as individuals. We may do things a little differently or need certain accommodations, but we have dreams, passions, interests, and hobbies just like anyone else.
My friends know me for my love of cats, polar bears, The Walking Dead, Gilmore Girls, and the music duo Karmin. I love getting to know new people, I love answering questions about FOP, and I love hugs!! I’ve noticed that sometimes people tend to keep to themselves instead of just asking me something they’re curious about.. or they’re afraid to hurt me so they don’t hug or shake my hand like they normally would. I really respect and appreciate when people are able to look past my physical differences and treat me like they would anyone else.”
Where can you find Jasmin five, ten years from now?
And we can’t wait to witness all of this come to life. The world needs a little more Jasmin Floyd in it, after all.
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