Jordan seemed unusually clumsy. At age 3, she tripped over her own feet regularly, especially when running. When Jordan also began dragging her feet, her parents knew something was wrong. After countless medical appointments, a geneticist suggested Jordan has a highly rare genetic illness called Giant Axonal Neuropathy (GAN). The incurable disease progressively impacts children’s nerve functioning, slowly restricting their ability to walk, talk and breathe.
Googling GAN, Jordan’s mom, Christa, came across a website launched by a family of a child with GAN. Reading about the girl named Hannah and looking at her photos, Christa instantly knew Jordan’s geneticist had identified the correct diagnosis.
“Jordan and Hannah at age 5 looked identical,” Christa says. “It was really difficult to see – it was laid out in black and white what the condition was. We went from having a clumsy kid to having this diagnosis.”
But despite the grim diagnosis, there was hope. Hannah’s family had been raising funds for genetic research that helped lead to a revolutionary gene transfer trial at the National Institute of Neurological Disorders and Stroke (NINDS) – the only hope to stop the disease from progressing.
“There were only about 70 kids worldwide with the diagnosis, yet there is a potential for a cure,” Christa says. “The trial gives us hope.”
Jordan and her mom Christa
In January 2017, Jordan became the seventh child to be injected with copies of a healthy version of her defective gene. More children have joined the trial since.
But hope comes at a cost. Travel from the family’s home in Edmonton, Canada, to the National Institutes of Health (NIH) in Bethesda, MD takes many hours, and flights are expensive. Thanks to supporters like you, The Children’s Inn’s free lodging and other supports are a big help to Jordan’s family, easing their financial burden and giving them plenty of fun afternoon and evening activities to look forward to after long days of medical appointments.
Jordan, 8, has asked her medical team to rearrange appointments to attend favorite Inn activities.
“We’re not allowed to miss a single activity,” Jordan’s mom says as she laughs.
“I like the mailboxes, doing schoolwork with Javin [The Inn’s education manager] and the activities,” Jordan says. “The playroom is my favorite and trips to the mall on Saturdays. I like petting Zilly [The Inn’s therapy dog] and giving her a treat.”
Jordan and her brother play with Zilly
Jordan’s brothers, ages 5 and 13, also enjoy the activities, and their parents appreciate the unique, supportive environment of The Inn.
“At The Inn, people are all in the same boat, sort of – you don’t get that at home,” Jordan’s mom says. “We also have met other children with GAN, which has been invaluable.”
It may take several years before researchers know whether the trial is successful in halting or even reversing the disease.
Your support of The Children’s Inn relieves the burden of illness on families like Jordan’s. Every donation, regardless of size, allows more families to benefit from free lodging, meals and recreational activities that make childhood possible despite serious illness, while accelerating groundbreaking research at the NIH. To support children like Jordan and their families, please donate.