Maddie's Song ~ The Power of a Mother's Love
The Children's Cerebral Palsy Movement
New mothers dream of having perfectly healthy children; princesses in ballet classes or budding superstars on sports teams.
When a child is born with special needs, those dreams are quickly shattered and a difficult new reality sets in.
In 2006, Debbie Fragner’s daughter, Maddie, was born three months early and the complications of her premature birth resulted in a diagnosis of Cerebral Palsy (CP).
While Fragner and her husband were initially immobilized by the shock and uncertainty of the diagnosis, Debbie’s fear was eventually transformed into determination and a commitment to do everything possible to maximize her daughter’s potential.
This determination translated into intensive early therapeutic intervention geared at addressing her daughter’s inability to stand independently and walk, among other things. This strategic approach proved to have great value.
Turns out that Maddie also possessed an incredible perseverance and zest for new experiences, so by age eight, she was able to balance on her own for brief periods and miraculously walked short distances independently. Still, she wanted more.
A Girl’s Dream to be a Ballerina
Maddie had hopes and dreams of her own; one of those was to learn to dance like a ballerina.
She shared this heartfelt wish with her mother in the fall of 2014. Given that Maddie wears braces on both legs, has difficulties with balance and requires the use of a reverse walker for mobility, Fragner wasn’t hopeful initially. She had already experienced the very real barriers to entry for a child of disability to access ‘the arts’. Still, she couldn’t shake the idea and began the quest of researching rehabilitative art forms for children with CP.
After scouring the research and querying CP experts around the country, she was left hopeful that promising rehabilitative research could be done that could build upon best practices gleaned from stroke rehab and Parkinson's Rehab research and that, in fact, is needed to be done.
In the process of her research, Fragner found that although interest was high to carry out innovative rehabilitative research, national funding was not available.
In fact, there is no dedicated U.S. line item federal funding for Cerebral Palsy research at the CDC or NIH, even though Cerebral Palsy has higher prevalence than muscular dystrophy, Parkinson’s disease, childhood cancer, hearing loss, spina bifida, hemophilia, fetal alcohol syndrome, or cystic fibrosis.
Children’s Cerebral Palsy Movement is Formed
The enormous gap in Cerebral Palsy funding and Maddie's dream of dancing ballet set Fragner on a whirlwind journey to found the Southern California nonprofit, Children's Cerebral Palsy Movement in 2015.
From there she formed a local team of physical therapists and professional dance instructors that would design a therapeutic protocol morphing elements of physical therapy, classical ballet technique and live music, with the goal of improving gait, balance and overall quality of life for children with Cerebral Palsy.
While being therapeutically valuable, the protocol would purpose to be fun and capitalize on the children’s inherent desire to learn to dance ballet and to build meaningful peer friendships.
A Multi-Institutional Collaboration Begins
As word of Children's Cerebral Palsy initiative got around, doors began to open for an important collaboration with other professionals that would prove to add even greater value to to the organization's work.
Soon, a collaboration was forged with pediatric orthopedic surgeons from CHOC Children’s Orthopedic Institute in Orange County, as well as researchers from the University of California, Irvine’s Pediatric Exercise and Genomics Research Center (PERC) and the UCI Department of Dance.
Doctorate of physical therapy students from Chapman University would soon sign on to volunteer their expertise as well, to assist the children in the study.
The result was a therapeutic pilot dance intervention building upon evidence based scientific principles, to be carried out on the premises of the University of California, Irvine this Summer for 11 children with Cerebral Palsy, who possess a strong desire to learn to dance ballet.
In the guise of a ballet class, this innovative therapeutic approach aims to stimulate musculoskeletal and neurological changes in the children, in order to increase functional mobility, gait, cognitive function, which may improve prognosis over time.
If the CCPM team and PERC demonstrate a connection between exercise and improved prognosis, then they are on their way to proving that CP is a diagnosis and not a destiny, and to building a case for NIH funding of larger trials.
Why Ballet? Why Live Music?
Neuroscience based research in the realm of stroke and Parkinson's shows that if an impaired individual engages in a highly motivating activity, with rigor and in presence of live music, that neurological changes and neuroplasticity can occur that can enable the subject to acquire improved function and, hence, compensate for impairments.
As for ballet, it has been documented to show numerous benefits for the formation of new nerve connections in the brain that affect motor control and balance in dancers. So, this combination seemed to be perfect, providing the children an opportunity to explore the joy of dance, while implementing an innovative protocol that could could stand to improve global function.
New York City Ballerina Joins the Cause
As CCPM’s initiative was getting underway at UCI, Fragner knew that ‘the movement’ needed an advocate in ballet – a world she knew very little about. By chance, Fragner discovered that New York City ballerina Carrie Lee Riggins was performing in southern California, so she reached out to her. One conversation led to another and miraculously, the respected ballerina was on board with the cause.
Having danced with the New York City Ballet from age 9 to 27, Riggins has danced her way throughout 11 countries, performed in the movie, 'Black Swan' and has appeared on numerous television programs.
Aside from her technical ballet skills, she is known for her innovation, as well as her heart for using her gift of dance to give back to those in need. It is out of this desire that Riggins signed on to support the Children's Cerebral Palsy Movement's initial pilot study, by committing to serve as a mentor, or "Fairy Godmother" of sorts, to the children in the program.
"These children deserve to experience the joy and magic inherent in dance" says Riggins, "I look forward to witnessing the dance therapy program's ability to improve the quality of lives for these little ones."
A Musical Match with Ties to David Bowie
Since live music was found in the research to embody healing qualities and to assist in eliciting neuropasticity of the brain, not just any musician would do.
The final piece of the puzzle was to find a musician to oversee the music for the team’s initial pilot study. Fragner once again set her sights high and through an introduction by Dr. Afshin Aminian of CHOC Children’s Orthopedic Institute, Fragner was introduced to the Music-Heals Project’s co-founder, Mike Garson.
Garson, a classically trained pianist is probably best known for his work with the late David Bowie. As Bowie's friend, Music Director, and longest running band member, Garson spent over 14 years as Bowie's 'Piano Man'.
Having started his own medical research organization that has been a vision of his with the Music Heals Project, Garson was naturally moved by what Fragner was doing and her passion to help children with Cerebral Palsy.
The Stage is Set
Both Carrie Lee Riggins and Mike Garson recently performed at Children's Cerebral Palsy Movement's launch party in Newport Beach, CA.
It was at this event that ‘the movement’s’ importance and potential impact was likened by Dr. Afshin Aminian to the significance that the March of Dimes played, in the form of angry and passionate mothers going door to door collecting dimes in the late 1940’s and 1950’s that would end up funding research that would result in the advent of the polio vaccine – the vaccine that nearly eradicated polio.
Dr. Aminian went on to say, “there is a need to move away from traditional rehab and to move toward treating the child as a whole person, in seeking to improve their function in activities of daily living. Exercise as medicine. That’s the new thing. What CCPM is doing is great and will gain in momentum.”
The Curtain Is About To Go Up
With a projected start date of July 7, 2016, up to eleven children with Cerebral Palsy will enter the dance studio at the University of California, Irvine, for what is to be an eight week therapeutic dance intensive.
They will spend three hours per week building friendships, indulging their passion to dance, while at the same time receiving valuable therapeutic instruction.
Thanks to the team comprised of Sofia Valenzuela-Sawitz, D.P.T; dance instructors, Janine Paulsen and Kim Caputo; study leader Kimberley Lakes, Ph.D., and Kelli Sharp, D.P.T. and co-researcher focusing on functional gait changes.
As well, the study will benefit from student volunteers and live musicians including, on occasion, Mike Garson. Their "fairy godmother", Carrie Lee Riggins, will frequent classes from time to time to encourage, mentor and keep the magic alive for the children.
At the end of the eight-week intensive will be an opportunity for the children to showcase their accomplishments before their adoring families and the local community.
Mike Garson will accompany the children with live, original compositions as part of his newly created Cerebral Palsy Ballet. Also, Carrie Lee Riggins will be on hand to perform and to celebrate the children’s successes.
Opportunities will be built in for the audience and media to ask questions of the doctors, researchers and professionals on hand.
Plans are already in place at a local dance studio to have a ballet class in place for the children to transition into after the study concludes to maintain the progress they've made.
The Children's Cerebral Palsy Movement is planning on building on the success of this first pilot study to include a larger study for more children next year as well as researching and developing other protocols involving passions that children might have in the areas of performing arts and sports.
A Call To Action
Meanwhile. the Children's Cerebral Palsy Movement is seeking community participation and corporate involvement to bring this unique therapy form to more children around the country.
Maddie had hopes and dreams of her own; one of those was to learn to dance like a ballerina.— Debbie Fragner
Ballerina ~ Carrie Lee Riggins
Carrie & The Power of Movement
I look forward to witnessing the dance therapy program's ability to improve the quality of lives for these little ones.— Carrie Lee Riggins
The Healing Power of Music
Legendary "Rock" Pianist, Mike Garson
Music is transcending and I believe it heals.— Mike Garson
While Debbie Fragner and her husband were initially immobilized by the shock and uncertainty of the diagnosis of Maddie's Cerebral Palsy, Debbie’s fear was eventually transformed into determination and a commitment to do everything possible to maximize her daughter’s potential.
From the CDC ~ 11 Facts you should know about Cerebral Palsy
Cerebral palsy (CP) is the most common motor disability in childhood, and children with CP and their families need support. Learn more about CP and what signs to look for in young children.
- Cerebral palsy (CP) is a group of disorders that affect a person's ability to move and maintain balance and posture.
- CP is the most common motor disability of childhood. About 1 in 323 children have been identified with CP according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network.
- CP is more common among boys than girls, and more common among black children than among white children.
- Most (about 77%) children with CP have spastic CP. This means that their muscles are stiff, and as a result, their movements can be awkward.
- Over half (about 58%) of children with CP can walk independently.
About 1 in 10 children identified with CP walk using a hand-held mobility device.
- Many children with CP have one or more additional conditions or diseases along with their CP, also known as co-occurring conditions. For example, over 4 in 10 children with CP also have epilepsy and a little less than 1 in 10 have autism spectrum disorder.
- Most CP is related to brain damage that happened before or during birth and is called congenital CP. Some of the factors that increase the risk for congenital CP are
- Being born too small
- Being born too early
- Being born a twin or other multiple birth
- Being conceived by in vitro fertilization or other assisted reproductive technology
- Having a mother who had an infection during pregnancy
- Having kernicterus (a type of brain damage that can happen when severe newborn jaundice goes untreated)
- Having complications during birth
- A small percentage of CP is caused by brain damage that happens more than 28 days after birth. This is called acquired CP. Some factors that increase the risk for acquired CP are
- Having a brain infection, such as meningitis
- Suffering a serious head injury
- The specific cause of most cases of CP is unknown.
- CP is typically diagnosed during the first or second year after birth. If a child's symptoms are mild, it is sometimes difficult to make a diagnosis until the child is a few years older.
- With the appropriate services and support, children and adults with CP can stay well, active, and a part of the community. Read the stories of children, adults, and families living with CP.
Early Signs of Cerebral Palsy
From birth to 5 years of age, a child should reach movement goals―also known as milestones―such as rolling over, sitting up, standing, and walking. A delay in reaching these movement milestones could be a sign of CP. The following are some other signs of possible CP. It is important to note that some children without CP also might have some of these signs.
In a baby 3 to 6 months of age:
- Head falls back when picked up while lying on back
- Feels stiff
- Feels floppy
- Seems to overextend back and neck when cradled in someone's arms
- Legs get stiff and cross or scissor when picked up
In a baby older than 6 months of age:
- Doesn't roll over in either direction
- Cannot bring hands together
- Has difficulty bringing hands to mouth
- Reaches out with only one hand while keeping the other fisted
In a baby older than 10 months of age:
- Crawls in a lopsided manner, pushing off with one hand and leg while dragging the opposite hand and leg
- Scoots around on buttocks or hops on knees, but does not crawl on all fours
How can professionals who serve young children help?
All children are unique, but sooner or later, you will see a child who is not developing as he or she should. You are a valuable resource to families. They look to you for information on their child, and they trust you.
Encourage families you work with to track their child's development, including movement milestones, and get help if they are concerned. You can also encourage the child's family to contact local early intervention system (birth to age 3 years) or local school system (3 years and older) for an evaluation.
It is also important to remember that a child with CP may have other conditions that can make it difficult for him or her to carry out daily activities and participate at home, in school, and in the community. Professionals who serve young children can help identify signs of CP as well as the other developmental disabilities or neurological conditions that children with CP often have, such as epilepsy and autism spectrum disorder. Identifying both cerebral palsy and other co-occurring conditions early can help ensure that children are screened and connected to the appropriate services and supports they need to address each condition.
There is 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.— Debbie Fragner
What other Publications are saying about Debbie Fragner's work
- Mother's Day: How 4 inspirational moms are changing their worlds - The Orange County Register
Life: Four moms wanting for their children inspire efforts | children, kids, dance, fragner, maddie, down, people, syndrome, palsy, cerebral
Like Maddie, here are awesome kids with Cerebral Palsy who are showing why CP will not be a permanent condition.
Behind Every Great Woman Stands Other Great Women:
Debbie Fragner has assembled a great team to carry out the mission of the The Children's Cerebral Palsy Movement.