Pay It Forward: Standing With Hope

Pay It Forward: Standing With Hope

by Matthew N. Skoufalos

The idea for Standing With Hope came to Grace Rosenberger the day she had her second leg amputated.

Her husband, Peter, recalls that his wife had been lying in bed, fatigued from the exertion of walking on her prosthesis, and watching television. She flipped to a documentary about Princess Diana working with victims of land mines in Southeast Asia, and said, “That’s what I’m going to do.”

It was not the plan that the two may have mapped out for their lives, but it was the one they have embraced.

In 1983, Grace Rosenberger was involved in a serious car accident that eventually claimed both of her legs. For 28 of the years that followed, Peter has been her caretaker. She’s had 78 surgeries, 60 doctors, been in 12 hospitals, and amassed $9 million in medical bills.

Peter Rosenberger is a piano player; Grace, a world-class singer, who once performed at the request of Barbara Bush at the Republican National Convention in Madison Square Garden. Today, they are parents to two boys, Parker and Grayson, who have “literally carried their mother on their back at times,” Peter said, and they operate a nonprofit organization that is powered almost entirely by pre-owned medical equipment.

The Rosenbergers’ Standing With Hope foundation collects used prosthetic limbs from donors nationwide, and ships them to Ghana, where they find second lives. Along the way, they pass through the hands of inmates in a Tennessee state prison, customs agents on two sides of an ocean, and medical professionals in west Africa.

But eventually, and thousands of miles away from their initial homes, they are recirculated into use.

“There’s a lot of amputees in a country the size of America, and we’re not running out of prosthetics,” Peter Rosenberger said. “Mostly they come from individuals; a family member passed away, and they don’t know what to do with the leg. You don’t want to throw these things in the trash.”

Finding a second user for a prosthetic limb is tricky, he said, because they’re custom fitted to the unique physiology of the wearer, and a secondary user can end up hurting themselves by wearing a prosthesis that wasn’t intended for them. But without access to the affordable option of pre-owned medical equipment, Standing With Hope would have a much harder time fulfilling its mission.

A brand new prosthesis is expensive, costing an average of $7,000, Peter Rosenberger said. The devices themselves are exceptionally durable, however. Moreover, many families of prosthetic patients would rather not see such a personal and sentimental artifact discarded after its owner has outgrown it or passed on. To do so not only closes the door on the difference they can make to the life of a non-ambulatory person — especially when there are so many such people in need the world over — but also misses out on the opportunity to recoup the significant investment it takes to construct and fit a prosthesis.

“If I had to buy everything new, there’s no way we could do it,” Peter Rosenberger said. “Instead of trying to come up with a cheap foot and a cheap knee, we came up with the best America has to offer.”

Before they reach their destination in Ghana, where Standing With Hope has a memorandum of understanding with the state Ministry of Health, the limbs are processed and disassembled by inmates at the Metro-Davidson County Detention Facility. Participation in the program is voluntary, Peter Rosenberger said, and he’s “never had anything but positive feedback.”

“One said, ‘I’ve never done anything positive with my hands before, let alone help the disabled,’ ” he said.

The sockets of the prosthesis are custom-fitted to their patients, and therefore is not reusable, Peter Rosenberger said; these are recycled. But the other components — connectors, adaptors, pylons, feet, and knees — may all be reused. Once they’re all stripped down, the parts are shipped to Ghana, where the prosthetics are cast, molded, modified and reused.

To aid in the process, the Rosenbergers receive donations of raw materials as well as of the prosthetics themselves. A New Hampshire airplane wing manufacturer supplies cast-off, custom fiber that can be laminated into the socket to create a lightweight connection that is “virtually unbreakable,” Peter Rosenberger said.

“Nobody’s doing carbon fiber sockets over there except us,” he said.

Standing With Hope also fundraises to ship materials, such as acrylic resin and an accompanying catalyst to aid in the fabrication of sockets, to Ghana every three years. At $7,500 per 55 gallons, Peter Rosenberger calls it “a big-ticket item for us,” but the organization is concerned with producing high-quality results.

“My wife’s policy is, ‘I’m not going to put a leg on somebody that I’m not willing to wear,’ ” Peter Rosenberger said, adding that Grace Rosenberger has donated some of her own prosthetic feet to the cause.

“If the socket doesn’t fit, that’s where you run into problems,” he said. “It’s got to be custom-fit.”

After the prostheses are provided and the sockets fitted, however, there’s still more work to be done in building a sustainable infrastructure that supports the patient after he or she receives the device. Providing a leg to a patient is “a lifetime commitment,” Peter Rosenberger said, particularly to pediatric patients, who will require adjustments to their prostheses as they grow and develop.

“If you can’t create a sustainable infrastructure, there’s no point in going over there,” he said. “You can’t show up and put a leg on somebody and say, ‘God bless you, live a good life.’ If something happens and there’s nobody there to repair it, that’s almost cruel.”

The Ghanaian Ministry of Health was already providing prosthetics before Standing With Hope set out to work in the country, but some were so rudimentary as to be carved wooden legs, Peter Rosenberger said. Rather than “reinvent[ing] the wheel,” he said, Standing With Hope inked a memorandum of understanding with the ministry, which has enabled the organization to be far more effective, legitimate and streamlined.

“We’ve got to work with a partner that can have a facility there, staff members there, somebody to help us get stuff through customs, and somebody to be on point to help us do the work,” Peter Rosenberger said.

“They’ve already got staff, they’ve already got facilities, they’ve already got equipment,” he said. “Let’s go ahead and help these folks step into a higher level of treatment.”

Thanks to the support of donors the world over, the ministry is able to charge a nominal $350 for the prosthetics, and if that fee is too great for the patient and his or her family to absorb, Standing With Hope will sponsor the leg, Peter Rosenberger said. Children are priority patients.

“We’ve helped hundreds,” he said. “If we’re doing 50 new patients a year, I’m very pleased. Prosthetics is a very labor-intensive surgery. They were taking three weeks a leg when we got there, that’s plus maintaining the existing patient load.”

But it’s all worth it, Peter Rosenberger said, to give “the gift that keeps on walking."

“It’s a lot of fun,” he said; “it’s a lot of work, but it’s great work.”