Our daughter is learning to speak up and advocate for herself

Posted December 7, 2020

ceciley doing ballet

Cecily is a vibrant and social, but tender-hearted 12-year-old ballet dancer who, despite her multiple diagnoses, not only finds true joy in the day to day but inspires it in all of us. 

After years of daily headaches (from the time she could express herself in words), “growing pains”, progressive bilateral leg deformities, and finally a frank knee dislocation with the absence of trauma, we sought a diagnosis. After Dr. Google helped me (mom) stumble upon an Ehlers-Danlos syndrome (EDS) website with red flags such as hypermobility, translucent and velvety skin, bladder issues, umbilical hernia, and chronic, diffuse pain, a geneticist appointment was made. 

Soon to follow over the next year were several diagnoses related to connective tissue disease: hypermobile EDS with a genetic defect for myopathy, significant craniocervical instability, bilateral miserable malalignment syndrome (a torsion of both femurs and tibias), dysautonomia, scoliosis, and more. While this year has been overwhelming, it is a relief to have diagnoses.

Cecily now enthusiastically attends two, 1-hour sessions of physical therapy each week to prevent dislocations, and along with a non-steroidal anti-inflammatory and some newly added mobility aids, she continues to dance. Some of her health care team are highly supportive and others not so much, but we take our lead from Cecily, who despite her young age is confident in making choices between work, play and rest. 

Ballet and performance light up Cecily’s world, and while her instructors say she is talented, we know the art is hard on anyone’s body, let alone those with disabilities. Cecily sometimes does feel sad or misunderstood when her peers can’t grasp her daily joint subluxations and other struggles, but she is learning to speak up, becoming an advocate for herself and others. Our family believes there is power in telling her story, and the vulnerability that comes with it not only creates awareness in surrounding ableism but allows Cecily ownership and dignity of her life with chronic illness.

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