Ayden Varno, was outside doing chores one day in April 2021 when he felt an excruciating pain, like “a hot knife was being stabbed into my back multiple times,” he says. Ayden, who is now 13, spent most of the next eight months in pain so extreme he couldn’t walk unassisted, sleep through the night, or follow a full school curriculum. He also suffered frequent non-epileptic seizures related to his pain. Doctors near his home in Ohio had no idea why Ayden was in so much pain or what to do about it; some suggested he was having a psychotic episode or being abused at home, says his mother, Lynda Varno. When, in December 2021, a clinician at Cleveland’s Rainbow Babies and Children’s Hospital finally diagnosed Ayden with Long COVID, both he and his mother broke down crying with relief. Families across the country are seeking pediatric Long COVID care. While research is accumulating and doctors are learning more, multiple families interviewed by TIME say they faced ignorance, dismissal, or disrespect from doctors, leaving desperate parents to fight for their children’s recovery themselves. TIME spoke with families across the country about their journeys in seeking pediatric Long COVID care. Read more at the link in bio. Pictured above: Ayden Varno with the family dog beginning to alert him of an oncoming seizure, Varno in a therapy swing that helps alleviate his pain, Varno shows some of the pills he takes in a day. Read more at the link in our bio. Photographs by @julie.renee.jones