Where it All Began…

debbie-maddieMothers dream of having perfectly healthy children…little princesses dancing about the house or little sports superstars running about outdoors. But for the mother of a special needs child, that dream can be suddenly shattered, like a piece of glass that slips through her fingers and crashes on the floor. When a dream shatters, the natural instinct is to sit among the broken pieces. But eventually, a choice has to be made; either sit amongst the ruins, or rearrange the broken pieces into a beautiful mosaic of brightly colored glass.

My daughter Maddie was born 3 months early in 2006, and the complications of her premature birth resulted in a diagnosis of Cerebral Palsy. I was initially immobilized by the shock, fear, and uncertainty of that diagnosis, but eventually my fear was transformed into determination and a commitment to do everything possible to maximize Maddie’s potential. The early years were hard work, but as her brain started to recover, all the hard work began to pay off. Maddie’s incredible perseverance and zest for new experiences allowed us to explore promising therapies, and by age 8, she was able to balance on her own for brief periods and to walk short distances independently.

Still, Maddie wished for more. In the Fall of 2014, she expressed a heartfelt desire to learn to dance ballet. I thought again of those broken pieces of glass as I wondered how she could possibly dance ballet, given her difficulties with balance and requiring the use of a reverse walker, as well as the fact that she wears braces on both legs. It was then that I began a quest to see if there was any state of the art rehabilitative work being done to address the needs and desires of children with CP. I discovered several success stories, but few formal scientific studies, and although interest was high, funding was not. There was a serious gap in both funding and research, which caused a determination to rise up within me to stand in the gap, not only for my own child, but for all children with CP.

New research in neuroplasticity indicates that CP might not be a permanent condition. So, a grassroots effort began that resulted in the formation of Children’s Cerebral Palsy Movement, a 501c3 nonprofit. To date, we have been committed to standing in the gap for children with Cerebral Palsy by designing and funding innovative rehabilitative research that stands to improve the quality of life and future outcomes for children with CP. Preliminary scientific results have been promising and could be key to unlocking national funding for more extensive research into the optimal management of Cerebral Palsy.

With the preliminary scientific study behind us, we were afforded the opportunity to translate these best practices into a community setting, in the form of a fun, therapeutic ballet class for kids, called Ability Ballet. The first two 10-week sessions of Ability Ballet have come to a close, and future dates will be determined. Additionally, we will continue to design other gender-neutral, therapeutic protocols in the near future, such as adaptive swimming, utilizing our same scientifically-founded approach.

Our current passion and focus is to unify the CP community by developing robust and comprehensive community programming that stands to provide important support, education, and services to these precious children and their families.

This beautiful mosaic is coming together, and we invite you to join the movement – the Children’s Cerebral Palsy Movement. Together, we are passionate about reshaping culture and transforming a diagnosis into a new destiny.

— Debbie Fragner

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