ABOVE: Two-year-old, Daxton Douglas. Douglas has a rare condition, Alternating Hemiplegia of Childhood (AHC), the awareness day of which is being recognized toady.

FAIRMONT- Today is International Alternating Hemiplegia of Childhood (AHC) Awareness Day and a very important day for one Fairmont family. Laura and Matt Douglas’s two-year-old son Daxton has AHC and their family has been trying to raise awareness of his neurological condition.

AHC is a rare genetic condition which affects roughly one in 1,000,000 people. Symptoms include but are not limited to neuro-degeneration similar to Alzheimer’s, low-muscle tone, difficulties with movement, seizures and paralysis.

“We just really want to spread awareness of it, it’s so rare that anybody I talk to doesn’t know what I’m talking about,” said Laura.

Daxton enjoys reading and listening to music. Laura said most of the time he’s a happy and energetic child, but he can also experience episodes which are difficult to predict wherein he can experience rapid eye movement, shaking and stiffness. These episodes can last from a few hours to a few days and can be followed by paralysis which can affect half or the entirety of his body.

“It’s always being prepared for the unknown because he could have one of these episodes at any moment; we were at his brother’s basketball game on Saturday, he was totally himself, ate lunch, and then during the game he had an episode and had to be given his rescue medicine,” said Laura.

Symptoms of AHC manifest differently in different individuals; for other children these periods can persist for up to a week.

Right now the future for the Douglases is uncertain; Daxton’s symptoms could improve to the point where he could attend school with little assistance but they could also worsen to the point where he’d require special accommodations the Douglases may not be able to provide.

“It’s really really unknown and that’s the scariest part,” said Laura.

Most medical professionals the Douglases see are unfamiliar with AHC. Laura has needed to explain what the condition is to his doctors when they see it on his chart. As a result of AHC’s obscurity it was very difficult for the Douglases to get a diagnosis. Daxton began to show symptoms very shortly after birth but the Douglases didn’t know what was causing them until April of 2022.

“We had doctors tell us sometimes babies do weird things and he’d just grow out of it,” said Laura.

Daxton and his family now see a specialized neurologist in the Twin Cities.

Because Daxton’s condition is rare it has been difficult for him to receive treatment. No comprehensive treatment or cure exists for AHC and any future treatment would require gene therapy which is still rarely available outside of a research environment. Medication can treat some symptoms of AHC but the Douglases must order theirs from a pharmacy in Canada because it’s unavailable in the United States.

“I have to order it six to eight weeks before I run out of what I have. Last time I had run out two days before it came in so we missed two days of medicine because I wasn’t able to get it,” said Laura.

There is a small silver lining as AHC has also led the Douglases to meet and find support through people they otherwise wouldn’t have. They keep in contact with an Iowa family who has a child with AHC and Laura has met many other parents through an online support group. In the fall of 2022 the Douglases and others supporting Daxton participated in a virtual fundraiser walk and another fundraising event was held at Pizza Ranch on Sept. 12, 2022.

Laura advises people who’d like to get involved in improving the lives of people with AHC to consider donating to the AHC Foundation which is working toward a treatment or a cure for AHC. Laura also sells t-shirts people can wear in solidarity with Daxton. Laura and her family write about their experiences on the “Daxton is one in a million” Facebook page.