Diagnosis: Spastic diplegia cerebral palsy
Superhero name: Captain Courageous
Superpower: Dancing through life’s obstacles.
Sidekicks: Her family, which also includes her Akron Children’s physicians, Drs. Baird, Swain, Chen and Adamczyk, and her physical therapists.
Why Madison is a #ACHero: Diagnosed with cerebral palsy, Madison has undergone multiple, complex surgeries and endured hours of physical therapy to be her best. She sings, dances and stays positive every step of the way thanks to her care teams at the hospital, home and school.
When she’s not busy overcoming obstacles: Madison’s most favorite thing to do in the world is dance, especially with her friends at Dance Unlimited. She also enjoys playing baseball, singing in choir and creating art.
Did you know fact: Due to her condition, Madison has re-learned how to walk 5 times. She’s always shown a lot of heart in therapy perhaps because she was born on Valentine’s Day!
Madison was a miracle baby from the start and continues to amaze others with her positive attitude and all-heart approach to being her best.
Madison was one of the smallest babies in the Akron Children’s NICU on Valentine’s Day 2005. She was born 3 months premature with a fragile heart and delicate lungs.
“I remember talking with so many specialists and even with the chaplain about Madison’s outlook,” said Jenessa Harrison, Madison’s mom. “They said Madison may never walk or talk and would need a feeding tube for the rest of her life...it was a lot to take in.”
Thankfully, Madison and her family weren’t alone. While the NICU team cared for Madison with assistance from ventilators and a feeding tube, her mom found support through the hospital’s social workers, parent mentor group and other NICU families.
“Social workers really helped us make a lot of connections that we needed,” said Jenessa. “We also clicked with other families in the NICU and supported each other, which helps when you think you’re the only one going through it.”
At 2 weeks old, Madison had surgery to close off the open patent ductus arteriosus in her heart to prevent a surplus of blood from entering her lungs.
The surgery was successful, but doctors also found Madison had a grade 4 intraventricular hemorrhage, causing blood to fill the ventricles of her brain. Later, Madison was diagnosed with bronchopulmonary dysplasia, which can make breathing difficult and cause problems with lung function.
Once home, Madison was still on oxygen and struggling to meet infant milestones. Two years later, Madison was diagnosed with spastic diplegia cerebral palsy (CP).
“CP wasn’t diagnosed early on because doctors had to wait to see how she was developing and the types of delays she had,” said Jenessa. “Being diagnosed helped give us something to go off of so we knew what to expect.”
Madison’s condition causes increased muscle tone, which leads to spasticity (stiff or tight muscles) in her legs. To manage it, Madison began seeing specialists in the Spasticity Clinic, attending physical therapy and receiving OnabotulinumtoxinA (Botox) injections in both legs.
During this time, she was also diagnosed with scoliosis. To manage changes in her spine and legs as she’s grown, Madison has had several orthopedic and spasticity surgeries. With each new surgery, Madison has had intense physical therapy to help with flexibility, balance and motor development.
“Physical therapy is life-long for Madison,” said Jenessa. “We continue to set goals for her and she never complains. In fact, Monday night therapy sessions are her favorite because Don Weisel from the Doggie Brigade brings Rosie or Daisy to offer support.”
To provide a more permanent fix for her spasticity, Dr. Chen performed a selective dorsal rhizotomy on Madison in 2015. This tedious surgery cuts out sensory nerve fibers, or rootlets, in the spinal cord to get rid of spasticity and improve mobility.
“Akron Children’s does a fantastic job with this surgery. I’ve talked to so many parents who have been thrilled with the results, and we’re one of them,” said Jenessa. “Children’s is a premier provider for this surgery because they have an incredibly skilled team and the hospital, as a whole, knows how to care for kids.”
Beyond ongoing physical therapy, Madison also has speech therapy to help with her Asperger’s syndrome and attends a group therapy class where she speaks and socializes with other kids with a similar condition.
Today, Madison balances a busy schedule – school, therapy, doctor appointments, dance class, choir practice – with an optimistic spirit.
“Madison’s favorite line is ‘I have CP, but CP doesn’t have me,’” said Jenessa. “She is our miracle baby, who’s now getting ready for high school, and we couldn’t be more proud of her.”
I’m fundraising as part of the FirstEnergy Akron Marathon, Half Marathon and Team Relay. Funds raised through my online fundraising page will assist patients and their families at Akron Children’s Hospital.
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