Brooke in her younger years....
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 was a loveable, bright and outgoing child who matured quickly since 2007. She was lucky enough to have an educational assistant at school who helped protect her from bumps, falls and everyday traumas that kids experience, as traumas cause disease progression.
At school, she had staggered entry and exits times to avoid the chaos of children pouring through the halls. She did not participate in a regular recess or gym class and lunched at the office or in her classroom. She was anxious about every near slip, bump or fall and fearful of any little pain in her body as she didn’t want anymore "bumps”.
In the winter Brooke was cautious and worried about slipping on ice and falling. She no longer walked her energetic dog, went sledding with the other kids at the hill after school or joined her friends in organized soccer, gymnastics and dance. Brooke gave up her two wheeler bike and the backyard teeter totters were removed for fear that an innocent accident might cause her jaw to permanently fuse.
Brooke remained a cheery, outgoing little girl who loved High School Musical, lip gloss and the colour pink. She soon had a pool in her backyard so she could enjoy the freedom of the water with her friends and she had a 3 wheel recumbent Banana Peel bike.
Despite the many changes that had been made in her life to protect her, Brooke did not fully comprehend the impact of her condition. FOP is unpredictable and progressive so Cam & Carrie tried to protect Brooke without taking away her physical freedom and childhood before the disease did.
Brooke and her family lived one day at a time with hope that the research, since the 2006 FOP gene discovery, would uncover disease modifying therapies and eventually a cure within the next 5 to 10 years. They worked alongside other Canadian and international families to raise awareness and fundraise for research. **Spoiler Alert...Clinical trials began within the 10 years since Brooke was dx and continue today with 3 clinical trials underway!
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 was a loveable, bright and outgoing child who matured quickly since 2007. She was lucky enough to have an educational assistant at school who helped protect her from bumps, falls and everyday traumas that kids experience, as traumas cause disease progression.
At school, she had staggered entry and exits times to avoid the chaos of children pouring through the halls. She did not participate in a regular recess or gym class and lunched at the office or in her classroom. She was anxious about every near slip, bump or fall and fearful of any little pain in her body as she didn’t want anymore "bumps”.
In the winter Brooke was cautious and worried about slipping on ice and falling. She no longer walked her energetic dog, went sledding with the other kids at the hill after school or joined her friends in organized soccer, gymnastics and dance. Brooke gave up her two wheeler bike and the backyard teeter totters were removed for fear that an innocent accident might cause her jaw to permanently fuse.
Brooke remained a cheery, outgoing little girl who loved High School Musical, lip gloss and the colour pink. She soon had a pool in her backyard so she could enjoy the freedom of the water with her friends and she had a 3 wheel recumbent Banana Peel bike.
Despite the many changes that had been made in her life to protect her, Brooke did not fully comprehend the impact of her condition. FOP is unpredictable and progressive so Cam & Carrie tried to protect Brooke without taking away her physical freedom and childhood before the disease did.
Brooke and her family lived one day at a time with hope that the research, since the 2006 FOP gene discovery, would uncover disease modifying therapies and eventually a cure within the next 5 to 10 years. They worked alongside other Canadian and international families to raise awareness and fundraise for research. **Spoiler Alert...Clinical trials began within the 10 years since Brooke was dx and continue today with 3 clinical trials underway!
Progression and unpredictability...
In the winter of 2010 Brooke experienced her first life changing FOP flare-up. She woke up one morning asking if there was something on her lower back because it hurt. Upon examination, there was a bump. Over several months they watched as the bump flattened out and was swallowed up in the intense swelling that travelled the entire length of her tiny body from her tailbone to the occipital bone at the back of her head.
Brooke had gained 18 lbs of fluid in her abdomen, back and shoulders. Her body became anvil shaped and she resembled a body builder. The excess weight and stiffness caused her to tip over and lose her balance causing further traumas. She developed severe vomitting episodes and would wake in the mornings to dry heaves causing her to miss weeks of school. She experienced gastro paresis and she had no appetite. She experienced hot flashes and was breathless walking any distance or using the stairs. When she laid down she had to bend one knee or arch her head up if both legs were down.
Her parents and the doctors were helpless to do anything but standby and watch. Brooke took what medications there where for inflamation and pain and eventually for the nausea and vomitting. Her parents had to slit the back of her tshirts so she could get them on and they had to buy new clothes that were larger, stretchy, zipped up or had vnecks as she could not lift her arms.
It was a very frightening time, not knowing if this was her new reality and then suddenly within a two week period she dropped from 103lbs to 85lbs, the swelling was gone and the FOP left a trail of bone that stiffened the muscles along her spine and neck and locked her arms limiting her range of motion. Thoughout this frightening time, Brooke kept her spirit and taught herself to use her left hand and figured out a way to dress herself again without help. She now required help to wash and brush her hair and complete other daily living activities. At school, she needed a wombat chair, an ergo desk and slant board to do her work. She got a laptop with Dragon software and sometimes her EA scribed notes for her.
Brooke had gained 18 lbs of fluid in her abdomen, back and shoulders. Her body became anvil shaped and she resembled a body builder. The excess weight and stiffness caused her to tip over and lose her balance causing further traumas. She developed severe vomitting episodes and would wake in the mornings to dry heaves causing her to miss weeks of school. She experienced gastro paresis and she had no appetite. She experienced hot flashes and was breathless walking any distance or using the stairs. When she laid down she had to bend one knee or arch her head up if both legs were down.
Her parents and the doctors were helpless to do anything but standby and watch. Brooke took what medications there where for inflamation and pain and eventually for the nausea and vomitting. Her parents had to slit the back of her tshirts so she could get them on and they had to buy new clothes that were larger, stretchy, zipped up or had vnecks as she could not lift her arms.
It was a very frightening time, not knowing if this was her new reality and then suddenly within a two week period she dropped from 103lbs to 85lbs, the swelling was gone and the FOP left a trail of bone that stiffened the muscles along her spine and neck and locked her arms limiting her range of motion. Thoughout this frightening time, Brooke kept her spirit and taught herself to use her left hand and figured out a way to dress herself again without help. She now required help to wash and brush her hair and complete other daily living activities. At school, she needed a wombat chair, an ergo desk and slant board to do her work. She got a laptop with Dragon software and sometimes her EA scribed notes for her.
Highschool and growing up...
In high school, Brooke had an EA to support her physical transitions and she was able to sit in a regular chair and desk! Her flare ups were ongoing, but minor compared to the year of flare-ups in 2010. She was now a teenager who loved her music, make-up, her friends (and boys.) She enjoyed the new found independence of high school, stubbornly refusing to be seated at an adapted desk and doing her best to be "like the other kids". Life was good and she had mastered ways to deal with her physical restrictions.
Unfortunately, Brooke was challenged again in 2014 with a painful hip flare at the end of grade 9 that caused her hip/leg/ankle to fuse over the next 12 month period. Due to the intense pain and her inability to walk or sit-up comfortably, she missed her entire grade 10 year at Saunders, but took as many courses as she could through home instruction and summer school. This was one of the most disabling losses she had faced. The hip fused in such a position as to force her back when she was in a seated position. Brooke entered into the Clementia clinic trial for a new compound called Palovarotene at the University of Pennsylvania Hospital in 2014/age 15yrs.
Brooke could still walk limited distances around her home, but with difficulty and fatigue due to the angle at which her hip/leg ossified. She could no longer fly in a commercial plane due to the angle of the seats and required assistance to get into and out of a chair or sofa or vehicle. She began learning many new tricks to regain as much independence as possible and she managed these with much grace and humour. Life became very different for Brooke during a time where her peers were starting their first jobs, learning to drive, going to parties and testing boundaries of growing up.
Brooke soon mastered a powerchair that she used daily at school, but she continued to miss school due to osteocondromas in her "good" hip that were very painful and robbed her of sleep and her ability to stand/walk easily. She was always happy to forego her powerchair for quick trips to the mall in a folding travel chair with someone pushing.
Throughout all of this Brooke kept a 90% average in almost all of her courses and proudly accomplished her goal of graduating with her class. She was accepted to King's University College at Western but put this on hold for a year until 2020, as she had much to learn about Para transit and other forms of wheelchair transportation, service workers, personal assistants, residence, and University services etc. in order to gain more independence. She is strong and smart and her family and friends are so proud of her accomplishments and have big hopes for her to achieve her dreams. We all have hopes that she will soon have access to drugs that will cause the FOP bear inside her to remain asleep and take nothing further from her.
Unfortunately, Brooke was challenged again in 2014 with a painful hip flare at the end of grade 9 that caused her hip/leg/ankle to fuse over the next 12 month period. Due to the intense pain and her inability to walk or sit-up comfortably, she missed her entire grade 10 year at Saunders, but took as many courses as she could through home instruction and summer school. This was one of the most disabling losses she had faced. The hip fused in such a position as to force her back when she was in a seated position. Brooke entered into the Clementia clinic trial for a new compound called Palovarotene at the University of Pennsylvania Hospital in 2014/age 15yrs.
Brooke could still walk limited distances around her home, but with difficulty and fatigue due to the angle at which her hip/leg ossified. She could no longer fly in a commercial plane due to the angle of the seats and required assistance to get into and out of a chair or sofa or vehicle. She began learning many new tricks to regain as much independence as possible and she managed these with much grace and humour. Life became very different for Brooke during a time where her peers were starting their first jobs, learning to drive, going to parties and testing boundaries of growing up.
Brooke soon mastered a powerchair that she used daily at school, but she continued to miss school due to osteocondromas in her "good" hip that were very painful and robbed her of sleep and her ability to stand/walk easily. She was always happy to forego her powerchair for quick trips to the mall in a folding travel chair with someone pushing.
Throughout all of this Brooke kept a 90% average in almost all of her courses and proudly accomplished her goal of graduating with her class. She was accepted to King's University College at Western but put this on hold for a year until 2020, as she had much to learn about Para transit and other forms of wheelchair transportation, service workers, personal assistants, residence, and University services etc. in order to gain more independence. She is strong and smart and her family and friends are so proud of her accomplishments and have big hopes for her to achieve her dreams. We all have hopes that she will soon have access to drugs that will cause the FOP bear inside her to remain asleep and take nothing further from her.
