DALLAS– After Itza Pantoja’s severely disabled son died at the age of 16, she made it her mission to ensure that the wheelchairs, beds and other equipment and supplies that had helped him could reach to other people in need.
Pantoja’s long struggle to find an organization that would accept the large donation ended when she learned that a group from 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 calms us down because other families who are going through what we’ve been through kind of have a helping hand,” Pantoja said.
The mum’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 journey also shows the community built not only around need, but also 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 child needed so much to live,” said Marta Cerda, ASI’s chief executive.
At 15 months, Dylan suffered brain damage after ER staff failed to realize a shunt placed in his head at birth to remove fluid was malfunctioning.
Pantoja said they researched therapies and equipment to improve her life, scrambling to raise money when insurance didn’t pay.
“I used to bake cookies and cupcakes,” Pantoja said. “I used to babysit while my husband worked two to three jobs a week.”
Many items, including a car seat, chair and 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 are always excuses for insurance not to pay, for not considering this equipment a medical necessity,” she said.
Some of the items from the Pantoja family that have been particularly helpful include a car seat big enough for Felipe, a chair that helps him stand up, and a bed designed so he won’t fall over. Before the new bed, Aguilar said they made “a barrier with pillows and things around the bed.”
The path that led the Pantojas to Chicago was winding. In the months following Dylan’s death in November 2019, the pandemic began to change daily life and Pantoja struggled to find a local organization that would accept the donation so large it filled a garage.
His first idea was to try and bring the items to Puerto Rico, where the family lived before moving to Texas when Dylan was 10.
She turned to Pedro Soler, the Puerto Rican attorney who had handled a medical malpractice case filed by the family regarding Dylan’s condition. But Soler found the cost would be too high and there was no guarantee 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 transferred 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 donation-centric press conference a year ago last month. Erin Clifford, partner at Clifford Law Offices, said knowing how much the donation meant to each family, she “started to tear up a bit” watching the mothers that day.
More than a decade ago, Yale School of Medicine professor Dr. Will Rosenblatt recognized the need to help connect people who had medical supplies and equipment to donate with charitable organizations. non-profit.
“It’s heartbreaking to bring this stuff to the landfill,” he said.
Rosenblatt founded Med-Eq, an online site that connects those looking to donate items with a group in need. He said that even though they work with 300 to 400 organizations, around two-thirds of the items submitted are never placed.
Finding a match, he said, has a lot to do with geography and funds. For example, many groups will only take items they can pick up, as shipping 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 daily requests from people wanting to donate large, previously used medical equipment. at home. And while her organization doesn’t generally accept such donations, she does work to find groups in the donor’s community that will.
“It just makes sense because of the logistics involved,” Chernock said. “These are large, 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 live without it,” she said.