After Itza Pantoja's severely disabled son died at age 16, she made it her mission to ensure that the wheelchairs, beds and other equipment and supplies that had helped him would get to others in need.
Pantoja's lengthy struggle to find an organization that would take the large donation ended when she got word that a group in Chicago was interested. So she and her family packed up a U-Haul and drove the 1,240 miles (1,995 kilometers) from San Antonio to drop it off.
“It kind of soothes us because other families that are going through what we went through kind of have a helping hand,” Pantoja said.
The mother's effort highlighted not only how hard it can be to get such equipment — even with insurance — but also the difficulty that can be encountered when trying to donate it. The journey also shows the community built around not only need, but a desire to help.
The head of the at-home care company that took the donation, ASI/NE Healthcare Services, said that just seeing the number of items that Dylan Yadriel Cruz-Pantoja needed made her emotional.
“It was deeply moving to see that this one child needed so much just to be able to live,” said Marta Cerda, ASI's chief executive officer.
At 15 months old, Dylan was left with brain damage after emergency room staff didn’t realize that a shunt placed in his head at birth to remove fluid was malfunctioning.
Pantoja said they sought out therapies and equipment to make his life better, scrambling to raise money when insurance wouldn’t pay.
“I used to make cookies and cupcakes,” Pantoja said. “I used to babysit kids while my husband was working two to three jobs in a week.”
Many of the items, including a car seat, standing chair and bed, went to Felipe Aguilar, a 12-year-old Chicago boy with cerebral palsy.
Felipe’s mother, Karina Aguilar, said it has often been difficult to get the equipment her son needs. “There’s always some excuses for insurance not to pay, not to consider that equipment as a … medical necessity,” she said.
Among items from the Pantoja family that have been especially helpful are a car seat that’s big enough for Felipe, a chair that helps him stand up and a bed designed so he doesn't fall off. Before the new bed, Aguilar said they were making "a barrier with pillows and things around the bed.”
The path that led the Pantojas to Chicago was a winding one. In the months after Dylan's death in November 2019, the pandemic began changing daily life and Pantoja had trouble finding a local organization that would take the donation so big it filled a garage.
Her first idea was to try to get the items to Puerto Rico, where the family lived before moving to Texas when Dylan was 10.
She turned to Pedro Soler, the attorney in Puerto Rico who’d handled a medical malpractice case the family filed over Dylan's condition. But Soler found that the cost would be too high, and there were no guarantees when it would arrive.
So Soler got in touch with a law firm he works with in Chicago, Clifford Law Offices, which reached out to a judge who got in touch with ASI. A Chicago-area group that helps children with physical disabilities helped bring everyone together, while another that redistributes medical equipment moved the donation from ASI's storage unit and conference room to the Aguilar family.
Pantoja said it was like reliving her own life when she met the Aguilars at a news conference centering on the donation held a year ago last month. Erin Clifford, a partner at Clifford Law Offices, said that knowing how much the donation meant to each family, she “started tearing up a little bit” as she watched the mothers that day.
Over a decade ago, Dr. Will Rosenblatt, a professor at Yale School of Medicine, recognized a need to help connect people who had medical supplies and equipment to donate with not-for-profits.
“It’s a heartache to take this stuff to the landfill,” he said.
Rosenblatt founded Med-Eq, an online site that matches those looking to donate items with a group that needs them. He said that even though they work with 300 to 400 organizations, about two-thirds of the items offered up aren't ever placed.
Finding a match, he said, has a lot to do with geography and funds. For instance, many groups will only take items they can pick up because shipping items can be difficult and costly.
Jason Chernock, director of programs and partnerships at MedShare, which distributes surplus medical supplies and equipment from the U.S. around the world, said his group gets daily inquiries from people looking to donate large medical equipment previously used at home. And while his organization generally doesn't take such donations, they work to find groups in the donor's community that will.
"That makes sense just because of the logistics involved,” Chernock said. “These are big, bulky items.”
ASI's operations manager, Ana Alvarez, said helping facilitate donations isn't something ASI usually does. But in this case, they made an exception.
“We couldn't walk away from it,” she said.
