SHANNON — A church fundraiser this weekend will help raise money toward a local 14-year-old’s medical treatment for an illness that robs its young victims of their ability to think and move.
Isaac Jacobs was diagnosed with adrenoleukodystrophy —ALD — at age 13 when his parents took him for treatment after noticing worrisome changes about him, according to his mother, Amy Michelle Oxendine Jacobs.
ALD is a deadly genetic disease that affects one in 18,000 people. It most severely affects boys and men, according to StopALD.org. The brain disorder destroys myelin, the protective sheath that surrounds the brain’s neurons — the nerve cells that allow people to think and to control muscles.
Because Isaac requires 24-hour care, his father, Michael Jacobs, stays home with him.
Jacobs said her son is stable right now but is very limited in his activities. He is legally blind, has trouble communicating, must have help walking and is mostly getting nourishment through a feeding tube. Jacobs said sometimes they can tell when he understands what they are saying and sometimes they can’t be sure. That’s a far cry from where he was less than a year ago when he appeared to be a perfectly healthy 13-year-old who loved baseball. His symptoms started just two days before Christmas 2015, Jacobs said.
“He had started that day acting a little bit different,” Jacobs said. “He started running a fever and he was delusional so that’s when we took him to the hospital and they did an MRI. It didn’t look right and that’s when they sent him to Chapel Hill.”
Isaac was diagnosed with ALD at the University of North Carolina Medical Center at Chapel Hill. On Oct. 13, he will have his first doctor’s appointment at The Children’s Hospital of Philadelphia in Philadelphia, Pa. To raise money for the family’s travel expenses to Pennsylvania, family, friends and church friends are hosting a benefit gospel singing at 6 p.m. on Saturday at Faith Community Baptist Church, 296 Benjamin Road, Maxton.
Performers include Jack Hunt and Family, Yolanda Bell, the McDonald Drama Team and others. There is no charge for admission to the singing but a love offering will be taken.
There will be food sales at the church beginning at noon and will include grilled chicken, hot dogs, hamburgers, chicken bog, cookies and beverages. “Brave Like Isaac” T-shirts will be on sale for $20.
In July, Isaac, his parents, his sister Kayla, 17, and his brother Braxton, 3, were given tickets to Walt Disney World in Florida by the Make-A-Wish Foundation.
Isaac has a Facebook page, Isaac Jacobs Journey, and an Instagram page, brave_like_isaac, to follow. There is a also a Go Fund Me page at gofundme.com/2efpzf38.
Jacobs is among those hoping that all hospitals will begin testing newborns for ALD because the earlier it is caught, the more that can be done to alleviate symptoms. An online petition seeking that policy can be found by searching “Aidan’s law” at change.org.