One Mom’s Journey Inspires Her to Build a Community for Kids and Families Affected by Pediatric Stroke

Addison, 3, suffered a stroke at birth.

Words can hit like a ton of bricks. For Kaysee Hyatt, it was four words that hit her so hard her world momentarily stopped.

At the start of a weekend camping trip with her family, she received a call from her doctor with the results of her daughter’s magnetic resonance imaging (MRI), “It was a stroke.” The world faded before Hyatt and the isolation of such a diagnosis set in, not only for her, but for her baby girl, Addison.

Before that moment, Hyatt had never heard of pediatric stroke, but as she would find out, it was not that uncommon. Approximately one in 2,000 newborns have a stroke each year. For children age 1 to 18, stroke occurs in about 1 out of every 20,000. Addison suffered her stroke during birth.

Addison’s family noticed something was wrong in her first few months of life; her mobility was limited and she completely favored her right side. When she was 6 months old, they received the diagnosis that explained why.

Stroke happens when blood that carries oxygen stops flowing to the brain. Within minutes, brain cells can begin to die, which can lead to stroke symptoms and can sometimes cause neurological issues or death.

“We didn’t know what it meant at the time,” said Hyatt. “We went through a gamut of emotions. I felt angry, guilty and scared. I kept asking myself if I had done something wrong.”

Seattle Children’s has the only pediatric vascular neurology program in the Pacific Northwest and brings together specialists from many areas to care for children throughout the region who suffer from a stroke.

“Stroke has an enormous impact on families,” said Dr. Catherine Amlie-Lefond, director of Seattle Children’s Pediatric Vascular Neurology Program. “Although childhood stroke is about as common as childhood brain tumors, families are often stunned by the diagnosis. We want them to know that we have seen many children who have had strokes and that we can offer support and hope.”

Seattle Children’s Pediatric Vascular Neurology Program became like family, according to Hyatt. Addison was placed on a road to recovery at Seattle Children’s with the help of occupational therapy, physical therapy and speech and language services. Every week, Addison made strides.

“We are forever grateful for the incredible care and services offered at Seattle Children’s,” said Hyatt. “Her team of doctors and therapists has become an extension of our family and without them, we would be lost.”

Providing hope to other families

Addison Walking
After treatment at Seattle Children’s, Addison has been able to walk and run on her own.

Hyatt’s story may be filled with moments of sadness, but more than that, her story is one of hope. Today, Addison is 3 years old, and is thriving. She’s not only walking on her own, she’s running.

“There were lots of tears and celebrating,” said Hyatt. “We didn’t know what walking would look like for her, or if it would have been an option, but she’s doing beautifully.”

Inspired by her daughter Addison, Hyatt set out on a mission. In 2015, she co-founded the Pediatric Stroke Warriors, in hope of raising awareness for pediatric stroke and to provide support and hope for any family or child who receives a diagnosis of pediatric stroke.

“There are hundreds of families who are navigating the effects of stroke with their child every day,” said Hyatt. “When we first found out about Addison, we felt alone, like we were they only ones affected by it. We’ve teamed up with Seattle Children’s to help provide support to families. When a new family is diagnosed, they may not be ready to reach out to us, but at least they know we’re here for them. To know that you’re not alone is really impactful.”

Hyatt and the Pediatric Stroke Warriors educate the public about signs and symptoms of stroke and provide support and resources to families diagnosed with stroke through Warrior Bags and Brave Boxes (toolkits and care package for families and children).

“We know what it’s like to be in their shoes,” said Hyatt. “It’s really great to hear families say how thankful they are for the support and to know they’re not alone.”

This month marks Pediatric Stroke Awareness Month in Washington. To learn more about stroke visit Seattle Children’s Stroke Program page.