Jasmin F. - Quilt Finished in 2004
Born: May 25, 1993
Illness: Fibrodysplasia Ossificans Progressiva
(FOP - muscles turn to bone)
Jasmin's Story
written by mom RoJeanne
When Jasmin was born, she had small bumps on her head and spine and a small malformation on her right toe. We saw a genetics doctor who ran a lot of tests. He said they were just osteomas, or some extra bone growth. The bumps did go away. When Jasmin was 5, her father got a job in CT. We moved from WI in 1998. On the way to school one morning, Jasmin complained of her neck hurting. By nighttime, she was just a tiny bit stooped. Within a month, she had lost the ability to raise her arms up over her head or have the ability to reach a light switch.
After 4 different doctors, we received the extremely difficult news. Our then 5½-year-old daughter, Jasmin, was diagnosed with a rare bone disease called Fibrodysplasia Ossificans Progressiva (FOP). It is a disease that causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone form across the joints in characteristic patterns, progressively restricting movement. FOP is a disease in which the body produces not only too much bone, but also an extra skeleton, that immobilizes the joints of the body. She can no longer move her head up and down or side to side, can only reach her arms up to table height, unable to scratch her back, wash/style her hair or reach her toes. The disease affects only 1 in 2 million people worldwide. Many doctors have never heard of it and it is often misdiagnosed.
My husband and I had some very dark and difficult days. Our family and friends were all back in WI. We were simply devastated, not able to wrap our minds around this bizarre diagnosis. (“This isn’t happening”, “It can’t be true”; “There just must be something we can do to to help"). There was an outpouring of support, love and encouragement from various sources that did help us keep going. To this day, we have numerous groups and individuals willing to keep sharing Jasmin’s story and help us in our fundraising efforts.
Jasmin has a burden for children in orphanages and abused animals, with a special sensitivity to others with difficulties.
Through Paul Newman's Hole in the Wall Gang Camp in Ashford, CT, Jasmin experiences a week of fun each summer. She enjoys school, her classmates and teachers, writing, reading, computer gaming, drawing, traveling and helping others.
Jasmin sells her own original greeting cards, calendars, Jasmin scented soap and candles through her own greeting card & gifts company. Her company continues to elevate the level of FOP awareness, helps Jasmin feel good about herself, raise much needed funds for research, and provides assistance for her future medical needs. Because of her tenacious spirit, her laughter and love for life... we do not want her to ever give up. A wonderful doctor at the University of Pennsylvania, Dr. Fred Kaplan has devoted his entire life to help those with this disease. We do live with a spirit of hope and miracles! With the phenomenal FOP gene (ACVR1) discovery in April of 2006, there is now a renewed sense of hope and urgency to find a treatment and cure! Learn more at www.ifopa.org!
At times, she does have tremendous pain, discomfort and has to take a lot of medicine. She does get sad, mad and frustrated about having FOP. With her strong faith, family and friends, Jasmin knows that life goes on, that she is special and loved, and that people need to learn about FOP. Her smile is warm and engaging.
