Spirited Child Shows 'Fire for Life'
by MICHAEL J. MISHAK
Like most families with small children, the Makowiczs, of Spring City, Pa., begin each day with a well-rehearsed morning routine — only theirs involves even more advanced planning.
Nate, 7, suffers from nonverbal learning disorder, a disability with autism-like symptoms, and his parents, David and Heather, conduct nightly briefings to eliminate as much uncertainty as possible. But with two other children — Noah, 3, and 6-month-old Hope — that isn’t always an easy task.
The day begins at 6 a.m. when Nate rises. He takes cues from a custom-made picture schedule, ripping icons off a board after a task like brushing his teeth. Because another condition, gastrointestinal reflux, complicates digestion, he receives his meals through a feeding tube that connects to a port in his stomach.
Then, after his parents have helped him dress, a fiercely independent Nate, legs in braces, ambles to his school bus alone, sometimes with the help of a crutch, and endures the hour-long ride to a child development center in Coatesville.
There, his mother Heather said, he shines.
A fledgling singer, Nate leads others in song during music class. “It’s a whole different Nate that comes out,” Heather said. The situation was markedly different just a year ago in kindergarten, before Nate discovered music. A new school and music program made the difference, she said. “He takes life by the horns,” Heather said.
Nate Makowicz is the beneficiary of this year’s Run for the Hill of It, the annual 5-mile run and 1-mile walk benefiting the family of an area child beset by illness. Last year, the Friends of Erik — the nonprofit, all-volunteer group that organizes the charity event — raised $70,000 for Sean Mahoney, a 5-year-old boy who lost his left leg to a rare form of soft tissue cancer.
While some children crave toys, Nate longs for experiences. On a recent trip to Disney World, he insisted on sitting in the first car on every rollercoaster. “Nate’s got a fire for life,” David said. “He’s intensely-driven and strong-willed.”
That will is sometimes unwieldy. He suffers from both attention deficit hyperactive disorder and perseveration, the obsessive repetition of an action. The latter is often focused on elevator rides, a fascination his parents say developed over the course of many hospital stays. At home, his bathroom closet doubles as an imaginary elevator.
Enthralled with the mechanics of everything from cars to music, Nate has an exceptional long-term memory and pays sharp attention to detail. He once spent an entire class period slowly unscrewing the nuts and bolts of his desk until it crashed to the floor. “He loves to figure out how things work,” David said.
Shattered dreams, new hope
A “micro-preemie,” Nate was born at 23 and 1/2 weeks, more than three months premature. A brain bleed resulted in a host of complications, including cerebral palsy. For the Makowiczs, the news was devastating and unrelenting. In their late twenties, David and Heather had been married for just six years at the time. Each new diagnosis triggered another period of grief for the young couple, a debilitating process David describes as “the shattering and reforming of dreams.”
But their strong bond and shared faith gave them strength. With the help of a therapist and support groups, they came to see Nate as a person, not an issue, David said. “I went from viewing the special-needs lifestyle with pity to viewing it with honor. It opens you up to a new side of life.”
“It gives you tremendous focus on what’s most important,” Heather said.
After consulting with a perinatologist, a doctor specializing in high-risk pregnancies, the Makowiczs decided to try again. Both Noah and Hope were born without incident. The decision was not easy, David said. “It came down to conquering fear and pursuing knowledge,” he said. “And a lot of prayer,” Heather added.
With the arrival of a sister, Nate has matured, Heather said. He offers to contribute at every turn, and is more active than ever before, she said. Nate plays softball through Special Olympics, enjoys swimming at the local Y, and practices his singing with the help of a karaoke machine.
With new medication, Nate, who also suffers from epilepsy, has been free of seizures for six months. Before, the episodes would come without warning. He was rushed via helicopter to Children’s Hospital of Philadelphia almost monthly.
High costs
The situation has taken a financial toll. In addition to the occupational and physical therapies, the Makowiczs have had to undertake a number of home improvements to ease life for Nate while caring for two other children.
They outfitted each set of stairs with double railings, renovated an unfinished basement, installed an extra bathroom and graded their backyard so Nate could play without having to navigate steep slopes.
Playground equipment, including a swing set and a trampoline, helps feed a “sensory diet,” which counteracts another of Nate’s disorders, one that affects coordination and balance. A custom tricycle, designed with pulleys to facilitate pedaling, cost the family more than $700. And David is still looking for something safer to replace the stool Nate uses to get into the family van. Everything, he said, is aimed at structuring his son’s independence. “It’s a dynamic process,” David said. “We’re always looking at the next step in life.”
While the family enjoys healthcare coverage through David’s employer, SEI Investments, an asset management firm based in Oaks, Pa., there are leftover costs. The Makowiczs have paid thousands of dollars out of pocket for medical treatments and respite care. They also have to absorb the cost of new eyeglass prescriptions several times a year, the result of Nate’s premature retina.
Having their son selected as the Run’s beneficiary is “a great honor,” David said. Notwithstanding the financial support, the Friends of Erik have introduced the Makowiczs to a new network of special-needs families. “It’s just overwhelming,” Heather said.
After nearly 18 years of spearheading the effort, founder Anne McNally has passed the torch to two longtime volunteers, Mark McMahon and Beth Breault. They hope to register more than 1,000 runners for the July 30 event, which begins at 8:30 a.m. at Northwestern Avenue and Forbidden Drive in the Wissahickon.
For more information, visit: www.runforthehillofit.org
