DALLAS (AP) — After Itza Pantoja’s son died at age 16, she made it her mission to make sure the wheelchairs, beds and other equipment and supplies that had helped him went to others in need.
Pantoya’s long struggle to find an organization that would take the large donation ended when she learned 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 gives us comfort because other families going through what we went through have a helping hand,” Pantoja said.
The mother’s effort highlighted not only how difficult it can be to acquire such equipment—even with insurance—but also the difficulty that can be encountered when trying to donate it. The journey also shows the community that is based not only on need, but also on the desire to help.
The head of the home care company that received the donation, ASI/NE Healthcare Services, said just seeing the number of items Dylan Yadriel Cruz-Pantoja needed made her emotional.
“It was deeply moving to see that this one child needed so much to be able to live,” said Marta Cerda, CEO of ASI.
At 15 months old, Dylan was left with brain damage after emergency room staff failed to realize that a drain placed in his head at birth to remove fluid was malfunctioning.
Pantoja said they sought treatments and equipment to make his life better, trying to raise money when insurance doesn’t pay.
“I was making cookies and cupcakes,” Pantoja said. “I used to take care of the kids while my husband worked two or three jobs a week.”
Many of the items, including a car seat, an upright chair and a bed, went to Felipe Aguilar, a 12-year-old boy from Chicago with cerebral palsy.
Felipe’s mother, Karina Aguilar, said it was often difficult to get the equipment her son needed. “There’s always some excuse for insurance not paying, for this equipment not being considered a … medical necessity,” he said.
Among the items the Pantoja family has found especially useful are a car seat that’s big enough for Felipe, a chair that helps him stand up, and a bed designed so he won’t fall. Before the new bed, Aguilar said they were building “a barrier with pillows and stuff around the bed.”
The path that led the Pantojas to Chicago was winding. In the months after Dylan’s death in November 2019, the pandemic began to change daily life, and Pantoja had trouble finding a local organization that would take the donation so large it filled a garage.
Her first idea was to try to take the items to Puerto Rico, where the family lived before moving to Texas when Dylan was 10 years old.
He turned to Pedro Soler, the lawyer in Puerto Rico who had 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 contacted a law firm he works with in Chicago, Clifford Law Offices, who contacted a judge who contacted 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 meeting room to the Aguilar family.
Pantoja said it was like reliving her life when she met the Aguilars at a press conference focusing on the donation held a year ago last month. Erin Clifford, a partner at the Clifford Law Office, said knowing how much the donation meant to each family, she “started to tear up a little bit” as she watched the mothers that day.
More than a decade ago, Dr. Will Rosenblatt, a professor at Yale School of Medicine, recognized the need to help people who had medical supplies and equipment to donate to nonprofit organizations.
“It’s heartbreaking to take these things to the landfill,” he said.
Rosenblatt founded Med-Eq, an online site that matches those who want to donate items with a group that needs them. He said that although they work with 300 to 400 organizations, about two-thirds of the items offered are never placed.
Finding a match, he said, has a lot to do with geography and funds. For example, many teams will only take items they can pick up because shipping items can be difficult and expensive.
Jason Chernock, director of programs and partnerships at MedShare, which distributes surplus U.S. medical supplies and equipment around the world, said his team receives inquiries every day from people who want to donate large pieces of medical equipment previously used at home. And while his organization generally does not accept such donations, they are working to find groups in the donor community that will.
“That makes sense just because of the logistics involved,” Chernock said. “These are big, bulky objects.”
ASI Director of Operations Ana Alvarez said facilitating donations is not something ASI typically does. But in this case they made an exception.
“We couldn’t walk away from it,” he said.