CANADIAN FOP NETWORK
FIBRODYSPLASIA OSSIFICANS PROGRESSIVA
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FOP is the only known condition that turns one type of tissue (muscle) into another (bone). Research in this area will one day benefit millions. 
ADAM Adam was born on June 16, 1987 in London, Ontario. We called him our little "peanut" because he was so small when he was born, but that didn't stop Adam from thriving. If you see any pictures of Adam he was always smiling and happy. He had chipmunk cheeks, and was happy to follow his big brother around all day long. He sang all the time, and he talked before he was two years old. He is now 21 years old, but was diagnosed when he was seven years old. The first seven years were tough years of travelling to many doctor's and hospitals to try to find a diagnosis for the large painful swellings that eventually turned to bone on his small body. We had many different diagnoses during that time. Rheumatoid nodules, rheumatoid arthritis, cancer, myositis ossificans, yet none really fit exactly what was happening to Adam. Then when he was playing with his brother on the jungle gym in the back yard and had a fall, he was taken to the hospital for X-rays of his shoulder. The technician there was shocked to see Adam's bony back of hills and valley's and asked me what Adam had. I said, I didn't know, that no one knew. The technician said he has a father in Toronto who is a doctor and he is sure they have spoken of seeing another child like Adam. He said he would contact his father, who in turn would contact my GP. So after an agonizing wait of a couple of weeks, the call came in, and I went to speak to the GP. That conversation led us to Philadelphia, PA and to an amazing man, and doctor named Dr. Fred Kaplan, and to the correct diagnosis of Fibrodysplasia Ossificans Progressiva. That was 14 years ago and Adam is still always happy and smiling. He loves comedy and playing on his computer. His favorite things are playing World of Warcraft and sports games on his X-box 360. His FOP has taken over his body, but not his spirit. He makes his family laugh on a daily basis. His favorite saying is, " I wanted to be a stand up comedian, but I can't stand up." He's an inspiration to all who meet him and everyone ends up loving him !  BROOKE March 2007, 6 year old Brooke and her family were enjoying March Break when Brooke complained about a bump on her arm she hurt while playing with her big brother Hunter. Upon examining the bump more closely her parents knew something was terribly wrong. After an emergency x-ray and ultrasound at Children’s Hospital of Western Ontario Brooke was admitted for an Oncology consult. Brooke underwent an MRI, bone scan, more x-rays and bloodwork and her family finally received a devastating diagnosis of Fibrodysplasia Ossificans Progressiva. Brooke is a loveable, bright and outgoing child who has matured quickly since 2007. She has been lucky enough to have an educational assistant at school who helps protect her from bumps, falls and everyday traumas that kids experience, as traumas cause disease progression. At school, she has staggered entry and exits times to avoid the chaos of children pouring through the halls. She does not participate in a regular recess or gym class and lunches at the office or in her classroom. She is anxious about every near slip, bump or fall and fearful of any little pain in her body as she “doesn’t want anymore bumps”. In the winter Brooke is cautious and worries about slipping on ice and falling. She no longer walks her energetic dog, goes sledding with the other kids at the hill after school or joins her friends in organized soccer, gymnastics and dance. Brooke has given up her two wheeler bike and the backyard teeter totters have been removed for fear that an innocent accident might cause her jaw to permanently fuse. Brooke remains a cheery, outgoing little girl who loves High School Musical, lip gloss and the colour pink. She now has a pool in her backyard so she can enjoy the freedom of the water with her friends and she has a 3 wheel recumbent Banana Peel bike. Despite the many changes that have been made in her life to protect her, Brooke does not fully comprehend the impact of her condition. FOP is unpredictable and progressive so Cam & Carrie try to protect Brooke without taking away her physical freedom and childhood before the disease does. Brooke and her family live one day at a time with hope that the research, since the 2006 FOP gene discovery, will uncover disease modifying therapies and eventually a cure within the next 5 to 10 years. They now work alongside other Canadian and international families to raise awareness and fundraise for research.  MIRANDA Miranda was born in January of 2005, and was diagnosed with FOP at age 2 years, 3 months. At the end of 2008, she is now almost 4 years old. She lives in Burnaby, British Columbia with her mom, dad and brother Owen (3 years older). Miranda has a lively imagination, and is full of energy! She loves playing with her plastic ocean animal toys, her stuffed puppy and kitty, and especially her brother. She also enjoys running around outside, and gathering stones, sticks, seashells, and whatever else she can find... While mom and dad are working, Miranda attends daycare 3 days per week. She does a preschool program at daycare, and is learning to recognize her letters and numbers, and is even learning a few words in French. At home, she loves to look at books and listen to stories. Miranda is in so many ways a typical little girl. However, she has challenges no child should have to experience: her right elbow is locked in an L-shape, her shoulders move very little and her back and neck are rigid, all due to the effects of FOP. Miranda and her family greatly anticipate the day when a medication will halt the further progression of her FOP, and surgery will be an option to correct some of the damage already done. Please help us reach that day by donating to the CFOPN, so we can fund research for treatment and an eventual cure for FOP! 
Two weeks after her 15th birthday Valerie noticed a painful swelling on her right side below her ribcage while out to dinner with her mother and sister. Valerie and her mother went to SouthLake Hospital in Newmarket where blood work, x-rays, and an MRI were done. Thankfully no biopsies were performed. After staying over night Valerie was referred to Sick Kid's Hospital in Toronto where she had a bone scan done. There after a team of doctors discussed her case, one doctor spoke up and mentioned Valerie’s big toes and the fact she doesn't have a knuckle in one of her thumbs. An orthopedic doctor got in contact with a doctor in Pennsylvania, Dr. Kaplan, and quickly briefed him on Valerie's case. Four months later Valerie and her father traveled to Pennsylvania to see Dr. Kaplan. In March of 1995 Valerie was diagnosed with FOP. In the next year or so Valerie's body rapidly started to develop bone causing limited movement in the neck, shoulders, and hips. Since then Valerie and her father have been going down to the University of Penn to see Dr. Kaplan annually. Thankfully Valerie didn't have to give up any physical activities because they were never of real interest for her. Valerie's main support system has been her family and a few close friends. Having that support system has helped Valerie through painful flare-ups, the frustrations that come along with the limitations, and shared in the joy of finding new ways to be more independent. For the past 2 and a half years Valerie has been living on her own in a condominium. Although FOP has restricted some of her daily activities she has not allowed it to rule her life. With a few simple gadgets around the house Valerie is able to live on her own safely. In fact she has been driving her trusty Mazda3 Sport since she was 16 years old with only a wider rear-view mirror to help with the blind spots. The greatest achievement so far for Valerie is graduating with a Social Service Worker diploma from Seneca College and becoming a godmother to her second nephew Owen. |
