With a tousled mop of blonde hair and a mischievous, charming grin, 2-year-old Jamison strolls around Ranken Jordan Pediatric Bridge Hospital like a celebrity. Visitors and staff can’t help but smile back as he confidently—with the help of leg braces—walks by on the way to his next destination.

This picture is a dramatic difference from when he arrived at Ranken Jordan in December 2018.

Three months before, Jamison began having trouble breathing. His pediatrician thought he had pneumonia but he continued to decline. In October, the toddler was diagnosed with Leigh’s Syndrome, a severe neurological disorder that causes the degeneration of the central nervous system and progressive loss of mental and movement abilities. It is a rare, genetic disease.

In hindsight, Jamison’s mom, Amy, realizes Jamison had been slowly regressing before his diagnosis. “He is the youngest of five children so when he wasn’t talking as much, I thought it was because the other kids were talking for him.”

Children with Leigh’s Syndrome can have difficulty coordinating movements to walk, speak, swallow and breathe. They often lose developmental milestones they had already achieved and neurological development is delayed.

When Jamison came to Ranken Jordan, he couldn’t sit up, swallow, walk or talk, and was relying on a ventilator to breathe.

“The day he arrived, he began physical, occupational and speech therapy,” Amy says. “With physical therapy five days a week, he got stronger and could soon sit up and began using a walker. One day, we came in and he was standing up in bed.”

His progress has been remarkable, Amy says. “He couldn’t use his right arm when he arrived and now he does. He loves to swing outside and play in the gym. He’s also very social now, where before he wouldn’t leave my side. Now he’s ‘hospital famous.’”

She says he can’t say words yet but with the help of speech therapy he can eat his favorite foods, spaghetti and orange sherbet, again. And he only uses the ventilator at night to help with breathing.

When Jamison was first diagnosed, the family had the option of finding a home care nurse or coming to Ranken Jordan. Amy says she had driven by Ranken Jordan many times in the past and never knew what it was. “Coming here was out of my comfort zone because I wasn’t familiar with it,” Amy says. “But once we were here, I saw how happy Jamison was and the progress he was making. And they do a lot for families here. Now I would tell anyone to come here.”

Amy and her husband have a combined family of five children ranging from ages 2 to 15. “They visit once or twice a week and come for siblings night once a month,” Amy says. “And at Christmas, Ranken Jordan gave all the kids presents. Now our oldest daughter wants to be a nurse.”

Ranken Jordan also helped the family find a night nurse to care for Jamison once he’s home. “They have helped prepare us for dealing with any ‘what ifs’ and have given us so many resources that we wouldn’t have even known about,” Amy says.

Amy also keeps in touch with another mom she connected with at Ranken Jordan. “She was here before we were so she showed us around and sent us pictures of Jamison when we couldn’t be there. She understood and we shared the same feelings.”

Amy admits she doesn’t know the future. “We have heard kids don’t live past age 3 with this disease but doctors are shocked at how well Jamison is doing. We just take it day by day and celebrate the milestones.”