By Jimmy Stingel, Associated Press
DALLAS (Associated Press) — After the severely disabled son of Itza Pantoga died at the age of 16, she made it her mission to ensure that wheelchairs, beds and other equipment and supplies that helped him reach people in need.
Pantoja’s long struggle to find an organization to take the big donation ended when she learned that a group in Chicago was interested. So she and her family packed a U-Haul and drove 1,240 miles (1,995 kilometers) from San Antonio to drop it.
“It kind of calms us down because other families who are going through what we’ve been through have some kind of help,” Pantoga said.
The mother’s effort highlighted not only how difficult it can be to obtain such equipment – even with insurance – but also the difficulty that can be encountered when trying to donate it. The trip also shows that the community built around him not only needs, but wants to help.
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The president of the home care company that received the donation, ASI/NE Healthcare Services, said just seeing how many items Dylan Yadril Cruz Pantoga needed made her emotional.
“It was very moving to see that this child needs so much to be able to live,” said Marta Cerda, CEO of ASI.
At 15 months old, Dylan developed brain damage after emergency room staff did not realize that the shunt placed in his head at birth to remove fluid was malfunctioning.
Pantoja said they have sought treatments and equipment to make his life better, and are rushing to raise money when insurance isn’t paying.
“I was making biscuits and cake,” Pantoga said. “I used to take care of the kids while my husband worked two to three jobs a week.”
Several things, including a car seat, permanent chair, and bed, went to Philip 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 are always some excuses for insurance not to pay, not to consider this equipment … a medical necessity,” she said.
Among the items from the Pantoja family that were particularly useful were a car seat big enough for Felipe, a chair that helped him stand and a bed designed not to fall off. Before the new bed, Aguilar said they were making “a barrier with pillows and stuff around the bed.”
The road that led the Pantogas to Chicago was a winding road. In the months following Dylan’s death in November 2019, the pandemic began to change everyday life and Pantoga had trouble finding a local organization that would take the donation in such large quantities that it filled a garage.
Her first idea was to try to move the items to Puerto Rico, where the family lived before moving to Texas when Dylan was ten years old.
She turned to Pedro Soler, the attorney in Puerto Rico who handled the medical malpractice case brought by the family over Dylan’s case. But Soler found that the cost would be too high, and there were no guarantees of when it would arrive.
So Soler reached out to a law firm he works with in Chicago, Clifford Law Firms, which reached out to a judge who contacted ASI. A Chicago-area group that helps children with physical disabilities helped bring everyone together, while another group that redistributes medical equipment moved the donation from ASI’s storage and conference room to the Aguilar family.
Pantoja said it was like reliving her life when she met the Aguilar family at a donor-focused press conference last month. Knowing how much a donation means to each family, Erin Clifford, a partner at Clifford Law Firms, said she “started to tear up a bit” as she watched the mothers that day.
More than a decade ago, Dr. Will Rosenblatt, a professor at Yale University School of Medicine, recognized the need to help connect people with medical supplies and equipment to donate with nonprofits.
“It hurts to take these things to the landfill,” he said.
Rosenblatt founded Med-Eq, a website that matches those looking 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 on display have not been placed at all.
He said finding a match had a lot to do with geography and money. For example, many groups will only take the items they can receive because shipping the items can be difficult and expensive.
Jason Chernock, director of programs and partnerships at MedShare, which distributes surplus medical supplies and equipment from the United States around the world, said his group receives inquiries daily from people looking to donate large medical equipment previously used at home. And while his organization generally does not take such donations, it is working to find groups in the donor community who will.
“It only makes sense because of the logistics involved,” Chernock said. “These are big, bulky items.”
ASI’s director of operations, Ana Alvarez, said helping facilitate donations is not something ASI usually does. But in this case, they made an exception.
“We couldn’t get away from her,” she said.
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