All in for Ellorie: How one dad is running to raise awareness of his daughter’s rare condition

When you look at Ellorie Cross you’ll see a spunky, smiley little girl. You’re likely to find her playing with her siblings, looking for a dog to pet or cuddling up with her parents to read a book.

She may be a girl of few words, but that doesn’t stop her from sharing her opinion. She’s expressive and determined. She’ll use sign language to ask for more snacks and loves to give sloppy kisses to those she loves.

What you likely don’t see are the daily challenges this strong and resilient little girl overcomes.

She may be tiny, but Ellorie is mighty.

Meet Ellorie and hear from her parents about her first few months of life as the family navigated a complicated medical diagnosis.

Ellorie was diagnosed with alternating hemiplegia of childhood (AHC) at just 9 months old. AHC is an incredibly rare genetic condition that affects roughly one in a million children worldwide.

The journey to her diagnosis took months, explains Kassi Cross, Ellorie’s mother. Ellorie was evaluated by various specialists including multiple ophthalmologists for her irregular eye movement but was told that all seemed fine. It wasn’t until an eye exam at Mary Bridge Children’s Eye Center in Silverdale when the ophthalmologist recommended she see a geneticist.

That very next step of genetic testing identified AHC.

The condition can cause alternating sides of her body — or more rarely, her entire body — to become weak or paralyzed at a moment’s notice, explains Garett Cross, Ellorie’s dad. It can also cause delays in developmental milestones, such as speech or walking, as well as cognitive impairment, seizures, low muscle tone and dystonia (uncontrollable muscle contractions).

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AHC is a lifelong condition with no identified cure. Episodes of paralysis can be triggered by nearly anything, Garett explains. She could be triggered by changes in the weather, discomfort, viruses, stomach issues or simply getting too excited.

“If she giggles too hard, her arms can become paralyzed,” adds Kassi.

With such a rare diagnosis, the family struggled to find someone who knew enough to guide them in the best treatment plan — until they met Annie Weisner, MD, PhD. Dr. Weisner is a pediatric neurologist at MultiCare Mary Bridge Children’s Hospital who studied under one of the only specialists in the country who focuses on AHC.

Kassi and Garett describe that first appointment with Dr. Weisner as a breath of fresh air. They found someone who knew AHC, but more important, who wanted to know Ellorie.

Ellorie turned 2 in February and is proving to her parents, doctors and everyone around her just how much she’s capable of.

And while her Mary Bridge Children’s care team is extensive — neurology, nutrition, orthopedics, orthotics, occupational and speech therapy, ENT and endocrinology — they don’t base their hope for Ellorie’s future on finding a cure but instead all that steps forward she’s taking. Research is still in the early stages for AHC, but that doesn’t mean they’ll stop trying each day to make the world around Ellorie better.

For this year’s MultiCare Sound to Narrows 12K race, Garett ran with that determined Ellorie spirit. With Ellorie riding shotgun in the stroller, her dad is running to raise awareness for AHC and the need for research.

And this won’t be the only time. Garett says he plans to wear his hot pink “All in for Ellorie” shirt in future races to keep spreading awareness.

Kassi, along with Ellorie’s siblings Berrick (5), Colette (4) and Brennan (3 months), cheered them on the entire way — just like they do each day for Ellorie and other kids facing complicated medical diagnoses.

“I ask my kids every single night, ‘What are you grateful for?’ and sometimes they ask me why I want to know,” Garett says. “And I tell them because today we get to move our bodies, today we get to go outside and go for a run or to the beach. Your sister doesn’t always get that choice.

“I want to teach my kids, and I would hope others, to show gratitude,” he continues, “and how much of a gift it is, to enjoy it and to appreciate it.”