Brooky's Recovery: Spinal Surgery

I am a friend of the family's and am starting this fund for Brooklyn and her family.

Brooklyn is the sweetest little 5-year-old girl with the biggest heart. She is the bravest little girl I have ever met. In her short little life, she has undergone multiple surgeries, tests, casts, braces, has had multiple medical issues, and the road ahead of her is long. Her smile and enthusiasm at the end of each day is inspiring. More then anything she just wants to be a normal kid.

Brooklyn was born with hip dysplasia and the doctors said she would never walk or talk. Brooklyn has so far proved the doctors wrong and is walking and talking up a storm!

At just 3 months old Brooklyn had a hip spica cast for 6 months followed by another hip spica cast for 2 months at 1 ½ years old.

Her short stature and small size left doctors questioning the possibility of an underlying issue. When Brooklyn was 2 years old she was diagnosed with Scoliosis. Her spine was in the perfect shape of an “S”. To prevent the curve from progressing, Brooklyn was casted 4 times, each time for 3 to 4 months. The Scoliosis curve was extremely aggressive and a brace was tried because the casts were not tolerated well. The brace was unsuccessful.

She endured many doctor appointments, tests, nerve conduction tests and a biopsy to obtain a diagnosis. A muscle biopsy led to the diagnosis of Central Core Myopathy (CCM) which is on the national list of rare disorders. She is the only one in the Edmonton area with the disorder and there are only 500 cases worldwide.

CCM affects the core muscles of the body; the muscles used for movement. CCM causes generalized weakness, difficulty using stairs or jumping (will lead eventually to the inability to do both) and the risk of malignant hyperthermia is great. Scoliosis, hip dysplasia and short stature are all associated with Central Core Myopathy.

In the next few weeks, Brooklyn will require surgery to have growing rods inserted in her spine to stop the Scoliosis progression. She needs the surgery very soon to avoid her rib cage from turning too much and possible affecting lung and/or heart function. Surgery is scheduled for the end of March 2016. She will require surgery every 4-6 months from the time the rods are put in until she is in her 30’s, unless she becomes a candidate for a new magnetic technology. This will require that she have another major surgery to have the rods replaced.

The spinal fusion surgery takes anywhere from 4 to 6 hours. Brooky will be hospitalized for a week and recovery time is yet to be determined. After surgery she has to start moving as soon as possible to avoid the muscles contracting.

Brooklyn is on the severe end of the spectrum for this disorder and will lose her ability to walk in the near future. She will require a wheelchair, chair lift, ramps, etc.




Goal: To raise enough money for Brooklyn and her family to do something fun before her surgery and to not have to worry about money for the time Brooklyn will be in the hospital and recovery. If we happen to surpass our goal, anything above would go towards a wheelchair/ lift/ ramps that she will need in the future.

Thank you so much for helping with Brooklyn’s fund. Any amount helps and is so very much appreciated.