Symptoms

At around two months old, Archie started having involuntary rapid eye movements, known as nystagmus. It caught our attention, but since everything else seemed normal, we carried on with our daily lives without too much worry.

Inside an ambulance, a newborn baby is lying on a bed, wearing a hat and headphones, connected to medical equipment and monitors.

The first seizure

A few weeks after we first noticed his eye nystagmus, Archie had a 15-minute seizure that required multiple rescue medications. An ambulance rushed us to our local hospital, where doctors determined he was having cluster seizures. From there, he had to be medevaced to Children’s National Hospital in DC.

A young boy lying in a hospital bed with medical tubes and monitors attached, appearing to be in a critical care setting.

Our short return home

Upon returning home from the hospital, we thought we were on the road to a potential epilepsy diagnosis. A couple of anti-seizure medications later and things seemed under control, until three days later, when another eight minute seizure sent us back in an ambulance. At this point we had more questions than answers.

A baby with a nasal cannula sitting in a red and black car safety seat, smiling.

Genetic Testing

During our second week-long stay at Children’s, the doctors decided to do more extensive genetic testing. Up to that point, we still believed it was just a rare form of epilepsy. But when the results came back, they showed a mutation in Archie’s ATP1A3 gene. Given his age and early symptoms, the most likely diagnosis was Alternating Hemiplegia of Childhood.

Smiling baby in a hospital bed with a bandage on their arm, wearing a white knit cap and hospital gown.

Official Diagnosis

Archie saw numerous doctors across multiple specialties, all puzzled by his presentation. It wasn’t until we connected with members of the AHC Foundation and Cure AHC that we finally felt confident in his diagnosis. These organizations helped us find leading neurologists at Children’s National who had experience treating AHC patients, giving us much-needed guidance and support.

A smiling baby lying in a hospital bed, showing a medical device attached to their chest, with a blanket and a box of wipes nearby.

The Big Picture

As newly found parents to a medically complex child, we began working with a diverse team of specialists to establish a routine and create a new “normal.” Our family has embraced the call to fight and advocate for Archie and his fellow AHC champions, striving to give them the best possible outcomes. We created this foundation not just for Archie, but for anyone navigating a similar journey—offering support, guidance, and hope to help find calm waters in turbulent seas.

A happy baby with blue eyes and short brown hair sitting indoors on a blanket, wearing a white pajama and smiling.