Help Me Maintain Independence!
When I was 5 1/2 years old, I was diagnosed with a rare bone disease known as Fibrodysplasia Ossificans Progressiva, or FOP. This condition causes bone to form in my muscles, tendons, ligaments, and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another. Due to FOP's progression, I've lost full mobility in my neck and jaw and partial mobility in my shoulders, elbows, and hips. I also have chronic pain, scoliosis, bony lesions on my back, and a restricted lung capacity due to the extra bone growth around my ribcage.
With your donation to my GoFundMe (which will go directly into my special needs trust fund), I will have more access to items and devices that will help me maintain as much independence as I can. I'm currently in need of a motorized scooter, various mobility aids, and accessible furniture.
Traveling has also become extremely important to me, as FOP is life-threatening and unpredictable. There are many states and countries I'd love to experience so I'm trying to do as much as I can while I'm still able. Your donation to my trust fund may go towards one of my future dream trips as well.
Thank you very much for your support!
www.jasminfloyd.com (my blog posts)
www.facebook.com/jasminsblog (more frequent updates)
www.ifopa.org (more information about FOP)
My story told by my mom, RoJeanne:
Our family moved from WI to CT in July of 1998 for a wonderful job opportunity. This was a brand new start for our family. We were excited, nervous, & a bit sad to be leaving family and friends, but we were ready for a new adventure. We headed to northeastern Connecticut, where Jasmin's dad went to work at his new job. I was trying to adjust to our new surroundings and get settled in, getting Jasmin registered for school, unpacking boxes, etc., when suddenly our life seemed to take a major turn.
In late fall, Jasmin complained of a stiff neck on the way to Kindergarten. I thought it might simply be from a bad nights' sleep. However, her neck gradually started tilting downward. Four doctors later, in Jan. of 1999, and 5 months after our move, our beautiful 5 1/2 year-old daughter was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), an extremely rare, genetic bone disease. Suffice it to say, that we were in disbelief, overwhelmed with intense emotions and very, very, sad. We wanted to be able to help Jasmin but there was nothing that could be done. We just had to keep on going, putting one foot in front of the other and not look back. We take it one day at a time. We feel very blessed that Jasmin is our dear daughter!
Fast forward 17 years and Jasmin is now 23; a beautiful, smart, creative, fun-loving, kind and talented young woman, ready to take on the world. She loves writing, reading, doing crafts, photography, traveling, public speaking, and her Maine Coon cat, Prancer.
We want her to be able to have the things she wants and needs to navigate successfully and enjoyably in this world. We are grateful you are learning about Jasmin and FOP. Please keep her in your thoughts and prayers. Thank You!
International FOP Association FACT SHEET:
What is Fibrodysplasia Ossificans Progressiva (FOP)?
One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.
Demographics of FOP:
- Genetic disease affecting 1 in 2 million people
- No ethnic, racial, or religious patterns
- 700 confirmed cases across the globe
- 185 known cases in the United States
Clinical Characteristics of FOP:
- Characteristic malformations of the great toe
- Flare-ups occur spontaneously or following bodily trauma such as: childhood immunizations, falls while playing, viral illnesses
- Misdiagnosed in a majority of cases as cancer
- Surgery makes the condition worse
- There are no effective treatments
Because of your overwhelming amount of kindness, I'll also be able to put future donations towards trips that I'd like to experience. I've grown to love traveling, especially by myself, as it truly makes me feel the most independent. My disease is life-threatening and unpredictable, so I'm trying to do as much as I can while I'm still able.
Thank you again for taking the time to learn about me and my life with FOP!
The link to my CNN feature (video and article) is:
The positive memories and happier days have helped me cope with a sudden FOP jaw flare-up that began at the end of April into May of this year. My jaw was already partially locked (approximately one inch of mobility) prior to the progression, but now it's only at one centimeter. This unexpected change has affected many aspects of my life (eating, talking, singing, brushing, etc.) and I've had to find new ways to adapt to my environment. I'm extremely thankful to be surrounded by multiple support systems of family, friends, and strangers, as they have helped me get through these challenging months.
If you're interested in reading more about me and FOP, please check out these links!
It's been about a year and a half since I last posted an update, and my life has been quite the adventure since then. I'm doing my best to keep a positive attitude throughout all the obstacles that come my way. I'm still a part-time student at my local community college, but had to drop one course and take the other one from home this semester due to my health. I've had various flare-ups of new bone growth (sometimes I notice slight loss of mobility, but sometimes it's just painful, frustrating, and exhausting) and I've been sick with the stomach flu a couple times (very, very serious for someone with my limitations).
BUT, I've also had some really great opportunities to share my story and raise awareness of FOP. I've traveled to CA (Oct. 2013), FL (Nov. 2013), TN (Mar. 2014), and MA (Mar. 2014) for different gatherings, meetings, and conferences. I'm very passionate about public speaking and writing!
I've recently started my own website and will be posting everything about my life (the good, the bad, my dreams, and my fears) shortly (bear with me, it's a work in progress!) - http://jasminfloyd.com. Subscribe to my future posts if you'd like!
A huge thank you to everyone who has expressed their love, prayers, and support towards me through this site as well as in my personal life. I'm very blessed.
xo, Jasmin Floyd