‘Feed the pig’ party raises money toward Bethel Park boy’s wheelchair
Harry Funk / The Almanac
Harry Funk / The Almanac
Cooper Mangini sits in the driver’s seat of a Bethel Park Volunteer Fire Company vehicle during the party held on his behalf.
Harry Funk / The Almanac
Harry Funk / The Almanac
Cooper Mangini tries on a firefighter’s helmet while his father, Ryan, watches.
Harry Funk / The Almanac
Cooper Mangini turns his attention away briefly as a Bethel Park Volunteer Fire Company vehicle approaches.
Harry Funk / The Almanac
Harry Funk / The Almanac
Tom White cooked 80 pounds of pork for the event.
Harry Funk / The Almanac
Cooper Mangini tries on a junior firefighter’s hat.
Some equally troubling news accompanied the diagnosis of Ryan and Kelly Mangini’s infant son, Cooper, with a rare neuromuscular disease.
“The doctors basically said, ‘OK, he has this. See ya,'” Kelly recalled. “And there was nothing they could do for him.”
Harry Funk / The Almanac
Harry Funk / The Almanac
The Kovach family hosted the fundraising party in their Bethel Park neighborhood. Nate and Abby’s children are, from left, Abe, Eli, and twins Maeve and Ben.
That was four years ago, before the Bethel Park residents learned of the U.S. Food and Drug Administration’s approval of Spinraza as a treatment for spinal muscular atrophy, and of Cooper’s selection for a clinical trial at Johns Hopkins Medicine.
“The drug essentially is supposed to halt the progression of the disease. And we’ve actually seen it do that, plus gain a little back,” Kelly said about her son regaining muscle strength. “It’s completely the opposite of everything we expected.”
Even with periodic trips to Baltimore for Cooper’s Spinraza injections, the Manginis are understandably encouraged about his progression. And they want to keep the momentum going.
That’s why they want him to have a new wheelchair.
He has two at the moment, one that is motorized and weighs 300 pounds, and the other a lightweight model that Cooper can operate manually. His parents prefer him using the latter to help build his arm muscles, but he’s outgrowing the chair and it does have some limitations.
Harry Funk / The Almanac
Harry Funk / The Almanac
Kelly and Cooper Mangini meet Adam Betlzer of Bethel Park Volunteer Fire Company.
“He needs to keep up with kids his age. When he’s in his manual chair, he can’t keep up. They’re running, and he’s just kind of stuck there unless we push him,” Kelly explained. As for the motorized unit: “When he has this, it’s just cumbersome and then he’s not using basically any of his muscles.”
A new model on the market would provide the best of both worlds, weighing in at just 17 pounds and having the capability of being outfitted with a motor.
“This chair will grow with him,” Kelly said. “It will fit him now, and then there are things you can do to it. You can get a new seat for it and new wheels for it, so we’ll be able to have it for a while.”
A mitigating factor, though, is the cost for a family already facing a mountain of medical-related expenses.
Harry Funk / The Almanac
Harry Funk / The Almanac
Gayle Dixon’s papier-mâché creation served as a piggy bank toward a new wheelchair for Cooper Mangini.
Enter Kelly’s onetime Bethel Park High School classmate Abby Kovach. She and her husband, Nate, organized what turned out to be a well-attended Sept. 22 block party to raise money toward Cooper’s new wheelchair.
Abby certainly can emphasize with the Manginis. When she was 8, she received a diagnosis of non-Hodgkin’s lymphoma, a cancer that starts in white blood cells, and subsequently went through two years of treatment.
“I watched people taking care of my brothers while my mom went to the hospital with me,” she recalled, and other acts of kindness and willingness to give made a strong enough impression on her that she always has wanted to help others.
Spinal muscular atrophy is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement.
Most of the nerve cells that control muscles are located in the spinal cord, which accounts for the word “spinal” in the name of the disease. SMA is muscular because its primary effect is on muscles, which don’t receive signals from these nerve cells. Atrophy is the medical term for getting smaller, which is what generally happens to muscles when they’re not active.
SMA involves the loss of nerve cells called motor neurons in the spinal cord and is classified as a motor neuron disease.
Source: Muscular Dystrophy Association
The centerpiece of the block party in the Kovaches’ Bethel Park neighborhood was a sizable papier-mâché pig to be “fed” with donations. Gayle Dixon, Abby’s mom, made it for her as a fun way for friends and family members to provide a financial boost when she was expecting twins Maeve and Ben, now 2.
Going with the “feed the pig” theme, neighbor Tom White cooked 80 pounds of pulled pork to go along with other delectables and refreshments for guests. His wife, Heather, helped lay the groundwork for the party by sharing the story of the Manginis, who attend the same church as her, with Abby.
Paying special visits were members of the Bethel Park Police Department, and Steven McGough and Adam Betzler pulled up in a Bethel Park Volunteer Fire Company vehicle, much to the delight of the youngsters. That certainly included Cooper, who had the opportunity to sit in the driver’s seat and learn how all the controls work.
And of course, he’s excited about the possibilities afforded by his new wheelchair:
“It’s going to help me go faster in the grass!”
Donations are still being accepted at Brentwood Bank, c/o #coopercan, Attention: Laura Evans, 401 McMurray Road, Bethel Park, PA 15102.
Harry Funk / The Almanac
Harry Funk / The Almanac
Cooper Mangini with his Bethel Park Police Department visitors: from left, Ryan Weister, Craig Smeltz, Sgt. Sean McGrail, Mike Mincin