Livingston County family hopes to raise $76K for accessible van for 3-year-old with rare neurological disorder

Part of funds would go to modifications to van, including ramp

Ethan Lambert has an extremely rare disorder, so rare it’s estimated only 300 people worldwide have been diagnosed with it. His parents, William and Kassondra Lambert said Ethan is one of three known cases in Michigan.
Ethan Lambert has an extremely rare disorder, so rare it’s estimated only 300 people worldwide have been diagnosed with it. His parents, William and Kassondra Lambert said Ethan is one of three known cases in Michigan.

PINCKNEY, Mich.Ethan Lambert has an extremely rare disorder, so rare it’s estimated only 300 people worldwide have been diagnosed with it. His parents, William and Kassondra Lambert said Ethan is one of three known cases in Michigan.

When Ethan was 1 year old, his parents noticed their son’s development was slowing down. Doctors thought it was cerebral palsy, but it wasn’t quite adding up. Two years and countless tests later -- in February 2021 -- Ethan was diagnosed with KIF1A Associated Neurological Disorder also known as KAND.

The disorder can rob someone of their ability to walk, talk, feed themselves or see.

“He has OT (occupational therapy), PT (physical therapy), speech therapy every week. He has lab tests done, he has neurology, ophthalmology, physical medicine, and rehab follow-ups and genetic follow-ups,” said Ethan’s mother, Kassondra Lambert.

The list of appointments goes on and getting him to those appointments isn’t easy.

“It’s actually painful as a parent because you want to give the world to your child. It’s really hard to pick him up, he’s 35 pounds. He doesn’t walk very well. He has a reverse walker and he has balance issues that’s unfortunately one of the issues with the disorder,” Kassondra Lambert said. “He also has low muscle tone which means he’s not as strong as kids his age. So if I want him to go up someplace I have to pick him up.”

The Lambert’s insurance doesn’t cover the cost of an accessible van; it doesn’t consider it “medically necessary.” That’s where they’re hoping the community will come in.

Through the national medical fundraising nonprofit, Help Hope Live, the family is raising $76,000 for an accessible van. Half of the money goes to purchasing the van and the other half is for modifications including a ramp for his medical stroller.

“We want something safe and secure. Something that will help us in the long term, not just something for the next three years,” Kassondra Lambert said.

She understands everyone doesn’t have the means, but she believes even sharing his story and shedding light on KAND will make a difference.

“For Ethan, it’s independence, it’s accessibility in a world that’s not built for him,” Kassondra Lambert said.

To learn more about how you can help Ethan and what KAND is, click here.

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About the Author:

Megan Woods is thrilled to be back home and reporting at Local 4. She joined the team in September 2021. Before returning to Michigan, Megan reported at stations across the country including Northern Michigan, Southwest Louisiana and a sister station in Southwest Virginia.