Family Journeys

Meet MacKensie

Finding Answers at Nine: Our Journey with Alternating Hemiplegia of Childhood

For the first nine years of my daughter’s life, we were living in a constant state of not knowing. She had mysterious symptoms—episodes where her legs and parts of her body would suddenly stiffen on one side, seizures, moments of confusion, sensitivity to noise and light, and overwhelming fatigue that didn’t seem to fit any pattern. We saw specialists, asked questions, tried to make sense of it all. But nothing truly added up We heard conflicting opinions and spent years piecing together a puzzle without all the pieces.

Then, at age nine, we finally had a diagnosis: Alternating Hemiplegia of Childhood (AHC). It’s an extremely rare neurological disorder, and while it gave us a name—something to hold onto—it also came with the reality that there’s no cure and very few established treatments.

Long before we ever heard the words “AHC,” our lives had already shifted. Her generalized epilepsy had set us on a path of our own—one filled with daily adjustments and constant learning. We learned to manage sensory overload, keep stimulation to a minimum, cut out excess sugars, and avoid synthetic foods. These changes became part of our everyday life long before the official AHC diagnosis, and even before genetic testing revealed the ATP1A3 genetic disorder.

Rather than relying solely on medications (which can sometimes be ineffective or have difficult side effects), we decided to take a holistic approach to her care—one focused on comfort, nervous system regulation, and prevention of triggers.

Sensory Tools That Made a Difference

Over time, we discovered that certain tools helped soothe her body and reduce the frequency and intensity of episodes. The first and most beloved: her weighted stuffed animals. These cuddly companions are more than just toys—they provide gentle, consistent pressure that helps regulate her sensory system. During an episode or when she’s anxious, holding her weighted stuffed animal gives her a sense of grounding and comfort.

We also introduced a weighted blanket into her rest routine. At first, I was cautious—AHC can affect mobility, so safety was a priority. But used correctly, the blanket became an essential part of her nap-time and bedtime, helping her body settle and sleep more deeply. The deep pressure stimulation promotes a sense of calm that’s hard to explain until you witness the change in your own child.

Creating a Calmer Environment

One of the biggest triggers for my daughter’s episodes is overstimulation—bright lights, loud noises, even too much conversation or movement around her can cause her nervous system to crash. So we’ve made her environment as peaceful as possible, with a strong emphasis on sensory deprivation when needed.

That might look like:

• A dimly lit, quiet room with blackout curtains
• Noise-canceling headphones or soft earplugs when out in the world
• A simple white noise machine for rest time
• Soft textures and calming colors throughout her space
• Limiting screen time and using blue-light filters

These aren’t restrictions—they’re supports. They help her body stay regulated and reduce the chances of seizures, hemiplegic episodes, and other disruptions that AHC can bring.

The Importance of Rest

Another key piece of our routine is dedicated napping throughout the day. Fatigue is one of the biggest triggers, and instead of pushing her to stay on a typical school or activity schedule, we’ve built in intentional rest windows. Some days, that means a short nap in the morning and a longer rest in the afternoon. Other days, she may nap several times.

We’ve learned to listen to her body—and trust it. That shift alone has made a world of difference.

Sharing for Awareness and Connection

Living with AHC can feel incredibly isolating. It’s a rare disorder, and most people have never even heard of it. But through trial, error, and a lot of love, we’ve found tools that work for her. Tools that don’t rely on side effects or guesswork, but instead support her in the present moment.

If you’re another parent navigating AHC—or any condition that affects your child neurologically or sensorially—I want you to know you’re not alone. There are ways to support your child holistically, gently, and meaningfully.

Here are a few resources we’ve found helpful along the way:

Our Favorite Weighted & Sensory Tools:

• Hugimals Weighted Stuffed Animals – Designed with therapeutic weight and softness.
• Warmies & Coldies – Warmable and cooling stuffed animals that have helped to bring a sense of calm. 
• SensaCalm or Mosaic Weighted Blankets – Customizable for size, weight, and fabric.
• Yogibo or Harkla – Offer sensory swings, body socks, and sensory-friendly furniture.
• Loop Earplugs or Puro Sound Labs Headphones – Great for noise sensitivity.
• Hatch Rest Sound Machine – Gentle white noise and light control for rest time.
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AHC might be rare, but the love and resilience we build every day are anything but.

If you’re walking this path too, I see you. 💛

 MacKensie's Mom