Beckley, WV (WOAY) – Chandler Harrison, a Beckley child born with rare genetic disorders and diagnosed with multiple forms of epilepsy, is preparing to undergo brain surgery, and his family is turning to the community for help covering the mounting cost of his care.
Chandler’s mother, Brittney Harrison, says her son has spent much of his short life in hospitals. He was under a year old when he fell ill and developed sepsis. His family flew him between hospitals before genetic testing revealed two rare disorders, Kleefstra syndrome and Coffin-Siris syndrome. Doctors later diagnosed cerebral palsy and three forms of epilepsy.
“His recent diagnosis is EPC,” Harrison said. “It’s one of the rarest forms of epilepsy, and it just has taken over his whole body.”
The seizures have grown worse over time. Harrison says Chandler spent nearly all of July in the hospital, including his birthday. After a feeding tube was placed, a seizure lasting two hours put him on life support.
The cost of his treatment, she says, has been staggering. Harrison says a three-week hospital bill reached $191,000, followed by another stay that ran about $161,000. She says the expenses are far from over. Her husband has used up all of his vacation caring for Chandler, and further time off will go unpaid. Chandler also needs special equipment to get by, from a wheelchair and a stroller to a lift installed in the family’s home.
Through all of it, Harrison says her son remains the same happy boy she has always known.
“He is the happiest little boy you will ever meet,” Harrison said. “He wakes up smiling every morning. But to know him is to love him.”
An even larger test still lies ahead. Harrison says surgeons plan to operate on the right side of Chandler’s brain to remove damaged tissue.
“They’re hoping, hoping that it can help with his development,” Harrison said. “You know, he may be able to walk, talk, crawl.”
“I pray that this is going to help him, and he’ll have a better quality of life,” she said. “Because no child deserves to go through anything like this.”
The family has set up several ways for the community to help. A hot dog and bake sale is scheduled for Friday, Aug. 21, from 10:30 a.m. to 2:30 p.m. at the Advance Auto Parts on Harper Road in Beckley. The family is also selling $5 raffle spots for a chance to win a free dinner for two from Golden Corral, with that drawing set for Aug. 31.
A GoFundMe titled “Hope and Healing for Chandler” has also been set up to help cover his care and can be found at gofund.me/f79172acb
