A Daughter’s Dream and A Mother’s Love
Cerebral Palsy is the #1 motor disability in America, yet it receives little dedicated federal funding for public research and rehabilitation. There is also a common misconception that it’s impossible to improve CP symptoms, yet that’s not true. Debbie Fragner, mother of Maddie, an eleven-year-old girl diagnosed with CP, has achieved remarkable success by focusing on the care, not the cure, with her own daughter and her organization, Children’s Cerebral Palsy Movement. Coming on the heels of partnering with the City of Mission Viejo for the recent Oso Fit 5K Run in March, she is now teaming up with Tutto Fresco for “A Recipe for Caring” on Saturday, April 28th from 3-5 PM, dedicated to families touched by CP, reassuring them they’re not battling alone.
At present, Cerebral Palsy families struggle in isolation without access to community and needed resources that could improve quality of life and long-term outcomes for their loved ones. Fragner, along with her organization, and partners like Tutto Fresco, seek to remedy current gaps in treatment by shedding a light on CP, a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities generally caused by damage to the developing brain at or near birth. Ever since her daughter was diagnosed, Fragner has been at the forefront of activism, researching ways to help Maddie and others struggling with feeling isolated, helping them to receive the proper care.
A Child’s Bravery
Inspired by Maddie’s willingness to try new experiences, like therapeutic horseback riding, acupuncture, neurologic music therapy, hyperbaric oxygen therapy, and therapeutic swimming, Fragner personally witnessed radical improvement in her daughter and hit upon the future of CP treatment: ‘highly motivating exercise as medicine.’ She realized that with proper education and tools, it’s possible to improve quality of life and long-term functioning for Maddie and others. For instance, in an effort to grant her daughter’s wish to try ballet, Fragner instituted a therapeutic pilot study combining classical ballet technique with physical therapy, in the presence of live music. Astounded researchers found a statistically significant increase in brain neuroplasticity, resulting in improved cognition, improved gait and feelings of self-worth in the CP children. These research findings inspired Fragner to start Ability Ballet, a local fun therapeutic dance class focused on improving balance, coordination and gait.
Dr. Afshin Aminian, a specialist in CP, has commended Fragner for her holistic approach, calling her a “pioneer” in the advancement of therapy and sees her organization as a key opportunity to advance CP care. “Cerebral Palsy is such a common thing. It’s one of the most common neurological disorders in the US,” said Dr. Aminian. “But there hasn’t been much support in research. It takes communities and parents like Debbie to raise awareness.” For her part, Debbie is building a network of likeminded partners, such as Tutto Fresco, to provide local support to families in an effort to eventually garner national funding for more extensive CP research and much needed innovations in CP rehabilitation.
Expanding The Community
In the meantime, Fragner continues to lead a grassroots effort to change the face of care and awareness. The Hsuehs, new to Orange County, reflects one such family Fragner’s organization was able to recently reach. For the last few years, the Hsuehs have struggled to provide care for their eight-year-old son Jayden who has Choreoathetoid Cerebral Palsy. Quickly recognizing the similarities between Jayden and Maddie, Debbie brought the Hsuehs into her support system, beginning with the Oso Fit 5K Run. Jayden’s father, Yu-Chen, said his life was forever changed by the event. “In short, what I saw was children who have been through more than most of us can imagine actually living their lives freely, with chains temporarily unshackled. It was beautiful, and that day is forever ingrained in my memory as one of the brightest days since Jayden was born in 2009.”
An Afternoon Of Tastes And Toasts
Seeking to re-create more wonderful moments like this, Debbie has partnered with restaurant owner Steve White to host “A Recipe For Caring” Fundraiser on Saturday, April 28th from 3:00 -5:00pm at Tutto Fresco (22332 El Paseo, Rancho Santa Margarita, CA). The funds raised will help provide many supportive programs for families impacted by Cerebral Palsy, including a monthly, professionally-led Caregiver Support Group, quarterly Caregiver Insight Classes dedicated to Healthy Living led by a certified Chiropractic Pediatrician, an academic tutoring program for CP children, and other fun social opportunities so families no longer feel alone.
“After meeting Debbie and seeing her passion to not only help her own daughter, Maddie, but also the thousands of other children impacted by a diagnosis of Cerebral Palsy, learn to overcome and achieve greater joy and improved function, I was hooked!” said White. The event will feature a silent auction with fantastic prizes. In addition, attendees can look forward to an afternoon of authentic Italian food, cocktails, desserts, live music, and a chance to mingle with OC’s leaders and influencers working to bring awareness and support to the CP community.
Ultimately, Fragner and her organization do not believe Cerebral Palsy is a static condition. “It is a diagnosis, not a destiny,” explained Fragner. Recent advancements in neuroscience support this determination, proving the brain is capable of restructuring and recovering lost function. However, more research is still needed to identify which therapies will be most significant in elevating quality of life. Fundraising such as the kind provided by Tutto Fresco and the mobilization of community support is exactly what’s needed to help so many isolated families.
For his part, White and his staff look forward to seeing members of the Orange County community, including professional business leaders, as well local government officials on April 28 and he encourages you to attend this special event. “I invite you to join me on this journey to lift up these medically fragile children that society has largely forgotten…I hope you will join me. I promise, you will be glad you did.”