Diagnosis: Spina Bifida
Superhero name: Mighty Miles
Superpower: Moving mountains. He overcomes obstacles with strength and perseverance.
Sidekicks: His little sister, Marlee, all of his grandparents, his aide at school, Mrs. Moore, and Miss Suzie, his physical therapist at Wadsworth City Schools.
Why Miles is a #ACHero: Born with spina bifida, Miles has undergone multiple surgeries and hours of therapies to manage the challenges brought on by his condition. Through it all, he does what’s asked of him while sharing kindness and love with others along the way.
When he’s not busy overcoming obstacles: He loves music and playing instruments of all kinds. He enjoys listening to music - from jazz to pop to the Beatles - on the Pandora app. Miles is a voracious reader and loves spending time with G and papa, grandma and grandpa.
Did you know fact: Miles doesn’t know a stranger. His personality is larger than life, and he always has a hug or high-five for anyone he meets.
At their 20-week ultrasound, first-time parents Megan and Mark Postak were excited to find out if they were having a boy or a girl. What should have been a conversation all about pink or blue was soon consumed with questions about their child’s birth defect, spina bifida.
“The news was quite a shock…my doctor scheduled us to meet with MFM the very next day to learn more about his condition and what we could do to support him,” said Megan. “We decided if people were going to talk about our son, we wanted him to be called by his name rather than the baby with spina bifida. We named him Miles the very same night.”
For the 5 months leading up to Miles’ arrival, his parents attended baby clinics, established Miles’ care team at the hospital’s Myelodysplasia Clinic and met other families impacted by spina bifida through the Parent Mentor Program.
The clinic would become Miles’ go-to place for care in the days and years ahead. The center brings together an array of specialists – from developmental and behavioral pediatrics and neurosurgery to occupational therapy and nutrition services – to create a care plan specific to each child.
“We wanted to be as prepared as possible,” said Megan. “We met with the surgeons and doctors who would care for him right from the start. We didn’t want to hand Miles over to strangers so by talking with his team in advance it helped put us at ease. We learned very quickly how to trust others with our son, and to trust that he was in the best hands.”
Miles was born on May 6, 2013 and immediately transported to the Akron Children’s NICU where his care team was waiting. At 2 days old, Miles had back closure surgery to prevent infection and save his spinal cord from more damage. At 5 days old, he had a shunt placed in his head to drain fluid and relieve pressure from his skull. He spent 11 days in the NICU.
At home, Miles began meeting newborn milestones – eating, sleeping and making sounds – on his own while working with his parents and therapists to help him gain strength and flexibility for mobility.
Spina bifida causes muscle imbalance – with one side of the body being stronger than the other – which made sitting and balancing on his own difficult. Miles persisted and learned how to use a dynamic stander to support his walking and now operates his wheelchair independendly.
Additionally, Miles was born with strabismus or crossed-eyes, which has required dozens of visits to the Vision Center, eye drops, patches and surgeries to strengthen his eye muscles.
“Every 3 months we come to the clinic to meet with Miles’ care team,” said Mark. “It’s a really convenient way for us to see all of Miles’ specialists in one place … Each visit is like meeting with friends because they always ask about him as a person. They genuinely want to know more about who Miles is, not just his medical condition.”
After years of procedures and countless therapy sessions, Miles started preschool in the fall of 2016 and he’ll head to kindergarten this fall. Miles is an outgoing, eager learner in the classroom where he also works to educate others about all the things he can do.
“Our biggest goal is to help educate others on his needs and to teach kids about those who are different by recognizing the things that make us the same,” said Megan. “We also organize a girls’ basketball classic at Wadsworth that brings together high school teams with local wheelchair teams to raise money to support families with spina bifida … we want others to recognize the ability in every disability.”
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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