Sirens, lights, wishes and hopes for boy with rare disease

First came flashing lights, then the woop-woop of sirens as families, friends and neighbors gazed northward. No one along the Lynnwood street asked “Where’s the fire?”

It was all for one bright-eyed boy, 3-year-old Eli Kincaid.

As an impressive display of fire trucks, emergency medical vehicles and police cars rolled past the home of Jill and Tyler Kincaid, their son Eli was joined by loved ones in his front yard. Held aloft by his grandfather, Kevin Terrell, the little boy in the fire-engine shirt and red pants took in the scene, reaching out and clapping with delight.

Tuesday’s spectacle along 64th Avenue West was organized by Make-A-Wish Alaska & Washington. In July 2018, then 18-month-old Eli was diagnosed with Alexander disease.

Also known as Alexanders leukodystrophy, the rare genetic disorder damages the myelin sheath, an insulator around nerve fibers. Most cases begin before age 2, with seizures, leg and arm stiffness, and developmental delays, according to the Genetic and Rare Diseases Information Center (GARD), funded by the National Institutes of Health. Over time, children with Alexander disease lose developmental milestones as the body’s functions begin to shut down.

Before the coronavirus closures, Eli’s family was looking forward to a Make-A-Wish trip to Walt Disney World in Florida this June. The 3-year-old has a big brother, Caleb, who is 9.

Working with South County Fire, the Make-A-Wish chapter put together Tuesday’s parade. Invited well-wishers practiced social distancing by watching and cheering from the parking lot of nearby Cedar Park Christian School. If Eli couldn’t go to the fun, the fun could come to him.

Leslie Hynes, a spokeswoman for South County Fire, said 14 vehicles from the fire agency were joined by five from the Lynnwood Police Department plus the van from Support 7, which provides help to victims and survivors of crises. “We have never done a Make-A-Wish. This is a first,” Hynes said.

The fire agency also delivered a gift to Eli. Before the parade, he was happily behind the wheel of a miniature fire truck, complete with flashing lights.

Due to COVID-19, the Make-A -Wish Alaska & Washington chapter has postponed 135 wishes, 92 of them for children in Western Washington, said Jessica Mathews, the nonprofit’s senior communications and marketing manager. “We will still grant his wish when it becomes safe to do so,” she added.

For Eli and his parents, the Florida theme park isn’t the most critical destination. On a GoFundMe online fundraising page, “Eli’s Journey,” the couple shared that their hope lies in Philadelphia. They have twice traveled to Children’s Hospital of Philadelphia to meet with Dr. Amy Waldman, a pediatric neurologist and medical director of the Leukodystrophy Center there. She is working on a treatment, perhaps even a cure, for Alexander disease.

As yet, there is no treatment beyond the seizure medication her son takes, Jill Kincaid said. It was a series of seizures that led to Eli being diagnosed with Alexander disease at Seattle Children’s Hospital, his parents said. According to their GoFundMe page, Eli has been enrolled in a study that involves traveling once a year to Philadelphia for follow-up appointments as progress is made toward a possible clinical trial.

“Who cares about Disney World? We’re hoping for a therapy,” Jill Kincaid said.

A lively playmate for his big brother, Eli appeared as energetic as any 3-year-old Tuesday. His parents said he suffered a regression about a year ago and wasn’t able to walk for several months. They celebrate all that he can do.

When Eli turned 3 in January, Jill Kincaid posted on Facebook that doctors initially gave them little hope, and said he may never walk, talk or go to school. “Not only did he learn to walk, he’s learning to talk and today he got to start school,” she wrote in the Jan. 23 post. Until the coronavirus crisis, he was attending the Edmonds School District’s Alderwood Early Childhood Center, a preschool program for children with developmental delays.

On Tuesday, a community turned out for Eli. Among more than 40 families gathered for his noisy parade was Pastor Tim Oas, of the Branches Church in Woodinville, where the Kincaids are part of the congregation.

A pastor, cousins, neighbors, friends, they all turned out to see a little boy get a wish — a parade of fire trucks and police cars. But hope was the word of the day.

“Hope is essential,” said Make-A-Wish volunteer Jordan Pennington.

Julie Muhlstein: 425-339-3460; jmuhlstein@heraldnet.com.

How to help

Learn more about Eli Kincaid’s struggle with Alexander disease and how to help at: www.gofundme.com/f/eli039s-journey