MORRISTOWN, Tenn. — Editor's Note: This story was updated to clarify that the family is working to continue caring for Xander Linkous in their current capacity and not necessarily connect him with an entirely new caregiver. Previously, the story incorrectly implied that he was not being cared for after his grandmother's death.
An East Tennessee family is hoping to continue caring for a 12-year-old boy diagnosed with some disabilities after his grandmother died.
She was the primary caregiver for Xander Linkous. Rylee Linkous, his sister, said he has brain damage, cerebral palsy and involuntary movement. She also said he has delayed learning abilities, delayed physical abilities and struggles to walk. Since his grandmother's death, family members have taken over the responsibilities of caring for him.
"He still has his days where he's becoming a preteen, like I said. He has attitude and gives me side-eye and he rolls his eyes at me," she said.
For the past 12 years, his primary caregiver was his grandmother. However, she died recently and since then, Xander and his family have had to find ways to provide similar kinds of care.
"She is the main reason that Xander is alive today because she never gave up on him," said Rylee. "My grandmother, she took the time to learn it. She watched the doctors and watched the nurses, and she always made sure that Xander got the care that he needed and deserved."
According to the National Library of Medicine, more than 90% of adults across the United States have never received caregiver training.
"Around 90% of the care provided in the United States is provided by an unpaid caregiver, and that's probably going to, is generally, a family member," said Jasmine Satterfield, a caregiver and registered nurse with Senior Care Partners.
Rylee said she is continuing to search for ways the family can continue providing him care, despite financial roadblocks and insurance issues. The family is hoping to raise some money to help care for Xander. Anyone who wants to help can donate online.
"Right now, we are fighting to hopefully keep the care that he not only needs, but the care that he deserves. In my opinion, Xander, in no way, asked to be in this condition and he didn't deserve it, but it happened," said Rylee. "Throughout our whole life, she's (his grandmother) always said, 'If anything happens to me, take care of my baby. If anything happens to me, take care of 'Booder'.' That's what we call him."