In March 2007 when she was 6 years old, Brooke Connell was diagnosed with one of the rarest diseases known to medicine – Fibrodysplasia Ossificans Progressiva (FOP).
FOP affects one in 2 million people. There are fewer than 1,000 diagnosed cases in the world. FOP is a progressive disease that turns muscles, tendons and ligaments into bone. FOP ultimately locks joints in one position and imprisons the sufferer in a second skeleton. Bone growth occurs during “flare ups”. Flare ups are characterized by rapid inflammation of the affected area and pain. They can occur spontaneously or as a result of trauma such as a bruise, injection or virus. Attempts to remove bone results in explosive new bone growth and creates more suffering for FOP patients.
At birth, Brooke had malformed big toes that looked like bunions. At the time, no one recognized the significance. When Brooke developed a swelling on her upper arm after playing with her brother her parents rushed her to the Children’s Hospital of Western Ontario. She was referred for an oncology consult and underwent several tests. Thankfully, a doctor then recognized the significance of Brooke’s malformed big toes (a characteristic of FOP) and she was spared a biopsy which could have resulted in new bone growth.
Brooke and her family soon received the devastating FOP diagnosis. Since then, Brooke’s life has changed in significant ways. To protect her from bumps and bruises, Brooke no longer participates in gym class, organized sports or regular recess. Brooke has staggered entry and exit times at school and a personal assistant at school to shield her from potential harm. She does have restricted mobility in her right arm, yet still finds enjoyment in childhood. She rides a three-wheel bike which is safer than a two-wheeler and enjoys swimming.
Since FOP is so rare, there is little awareness of the disease among the medical community or the general public. Brooke’s family and friends are members of the Canadian FOP Network -- a small, grassroots organization formed by FOP patients, their families and friends. The goal of the organization is to increase awareness, education, research, support and advocacy to help find a cure while maximizing the quality of life of individuals with FOP and their families in Canada. For more information about FOP or to donate towards finding a cure, please visit their website at www.cfopn.org or join them on Facebook at Canadian FOP Network.