Neighbors came out of their homes and lined 64 Avenue West in Lynnwood on Tuesday as fire engines, trucks, ambulances, and police cars slowly rolled by in a special ‘Make a Wish’ parade for Eli Kincaid, a 3-year-old boy diagnosed with a rare, but fatal genetic disorder known as Alexander’s Disease when he was just 18 months old.
“Alexander’s is a rare genetic disorder that affects a gene in the brain that makes him overproduce a certain kind of protein, which attacks the lining of the nerves,” Eli’s dad Tyler Kincaid explained. “So kind of like ALS, it shuts everything down over time and they eventually pass away.”
The disease gets progressively worse as children get older. Kincaid says for now, at 3 years old with slightly delayed development, Eli is doing OK, with medicine to manage seizures that allow him to have good days like Tuesday. But without a cure, by the time Eli is 10 he is expected to be in a wheelchair, before the disease turns fatal in his teens.
“It affects about one in a million kids. So it’s super rare. We’ve been going to the children’s hospital in Philadelphia once a year as part of a study, there’s actually a clinical trial, it’s ready to get started. But this whole thing [pandemic] has delayed that,” Kincaid said.
The clinical trial isn’t the only thing for Eli and his family on hold due to the pandemic.
“He was supposed to have his ‘Make a Wish’ trip to Disney World in June and that got postponed. But as part of that, they were going to do a visit to a firehouse to kind of kick it off, and that got canceled. So his ‘Make a Wish’ team were like, ‘well, how about we do a parade?’” recalled Kincaid. “So we were like, ‘that’d be a great distraction for everybody from everything that’s going on.’ We put it out to all our neighbors and put it out on Facebook, the fire department got on board, and they bought him a Power Wheel for the parade.”
It was a big day for Eli.
“It is a huge day, and he loves fire trucks,” Kincaid said.
Dozens from the neighborhood lined the streets to watch as the parade of fire trucks and other vehicles went by, with many children holding shiny balloons and blowing giant bubbles that surrounded the vehicles.
“Their goal really is just to knock it out of the park for this kid — that helps the kid, that helps the family, that helps the neighborhood, and helps the community,” said Lisa Wellington, Lynnwood PD’s crime reduction and volunteer organizer.
But it also helps the first responders.
“The crew loves being able to bring such a big smile to his face. It helps them because they need these events to help them sort of balance out the difficult and darker aspects of their professions. So it is super helpful,” Wellington said.
Eli’s parents were thrilled to see so many neighbors join in, and could not have been more thankful for the police and the fire crews. And now, they’re re-focusing on finding a cure.
Kincaid has no doubt it will come. It is a lot though, fighting to find a cure and facing down this constant threat to your little boy, knowing what the eventual outcome will be without that cure. But Tyler says he and Eli’s mom get through it.
“Our faith in the Lord is our biggest strength, and just knowing that no good things can come through bad situations, and he gets us through it. I mean, he is the light and the joy, he’s changed everyone around him through this and that helps us get through this,” Kincaid said.
The family is trying to raise money now to help fund the research for a cure to Alexander’s Disease and save not just Eli’s life, but the lives of all the other children diagnosed with this rare condition.
You can find out how to help Eli and his family as they search for a cure at this website.