Transplant in Pittsburgh helps 11-year-old; nonprofit group aids families in need
By Debra Erdley
Published: Monday, Dec. 24, 2012, 7:47 p.m.
When Heather Maeding counted her blessings on a gray December day in Pittsburgh, the number quickly grew.
Her husband Glen, across the state in their hometown of Nazareth, her six children and her parents top the list. Then comes the family who lost a child and gave the Maedings' adoptive son, Luke, 11, renewed life in a double-lung transplant at Children's Hospital of Pittsburgh on Aug. 14, 2010.
Luke, who struggled with immature lungs for years, gained the stamina to ride a bike and a chance to ride a bus and attend school.
Such miracles don't come cheaply, and even the best insurance doesn't cover everything.
That's where Children's Organ Transplant Association, or COTA, a low-profile, nonprofit organization based in Bloomington, Ind., stepped in. The group helped direct friends, family, coworkers, teachers and strangers to a fundraising campaign that generated nearly $45,000 for Luke's medical needs.
Complications punctuated his journey, and the Maedings have made many follow-up trips to Pittsburgh, including three days spent here this month.
Yet the family recounts high points.
The shy, 4-foot-tall charmer who loves Scooby-Doo, Legos, the Pittsburgh Pirates and the best-selling children's book series Geronimo Stilton, became the Children's Miracle Network's 2012 Pennsylvania Champion and gave Luke a chance to meet President Obama.
Luke's challenges began with his birth 14 weeks early. Heather Maeding, then a 27-year-old newlywed and nurse practitioner at St. Luke's Hospital in Bethlehem, and her husband, an IT specialist at the hospital, agreed to foster Luke when they learned he needed a family.
“We just felt we knew a child who needed a home, and we prayed a lot,” she said of the decision to adopt.
Luke became the first of four children — including two from Haiti with special needs — the Maedings would adopt before Heather gave birth to two daughters.
They thought Luke, like most preemies, would outgrow his need for oxygen by his second birthday. When he turned 5, doctors instead told them he would outgrow lungs that never matured. By age 9, Luke was placed on a transplant waiting list, diagnosed with interstitial lung disease.
Social workers from Children's told the couple about COTA.
“I like them because 100 percent of the money raised goes to the child's transplant cost,” said Children's social worker Laura Stabile.
The group gets high marks from charity watchdogs for channeling nearly every cent raised into young transplant candidates.
The organization counts 2,000 patients among those who have benefitted from $65 million raised since 1986, when the group formed among people who vowed no child should go without a transplant because of lack of money.
Experts estimate about 4,500 individuals under age 21 receive organ transplants each year. Costs vary, but Rick Lofgren, president of the COTA, said a child's transplant easily can cost $500,000.
Although insurance covers some transplant costs and Medicaid helps in states such as Pennsylvania, bills pile up.
“For most of our families it is not uncommon to have $10,000 to $15,000 a year in unreimbursed costs,” Lofgren said, citing insurance deductibles and co-pays, lost wages, travel and lodging.
Luke's COTA group sold cookbooks, held basket bingos, T-shirt sales, pancake breakfasts, and other events.
“It was amazing to see how the community came together and became a part of Luke's journey. He inspired others to do good things,” Maeding said.
She still works 24-hour shifts in the neonatal unit at St. Luke's. The COTA fund helped underwrite expenses during her two-month stay in Pittsburgh following Luke's transplant — when she gave birth to their younger daughter, Makayla.
Now, 28 months into Luke's recovery, Maeding makes gift bags to bring to Pittsburgh for other transplant families. They include such things as a soft blanket, a pillowcase — “It's so important to have something of your own in the hospital,” she explains — lip balm, healing hand cream, laundry packets, dryer sheets, a notebook so parents can write things down, and a wipe-off board.
“We wrote a letter inside, about our journey, about how these things helped us,” she said.
That Luke's experience can be a blessing to others is simply one more blessing that Maeding adds to her long, long list.
Debra Erdley is a staff writer for Trib Total Media. she can be reached at 412-320-7996 or firstname.lastname@example.org.
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