PINCKNEY, Mich. – Kassondra and William Lambert welcomed their son, Ethan, to the world in 2018 after what they described as a happy and healthy pregnancy.
His first year of life was uneventful and Ethan was developmentally on track, but around the time he turned one, his parents noticed he began to miss milestones.
Over the next year, they would see numerous specialists. Genetic testing later confirmed that Ethan has KIF1A Associated Neurological Disorder -- a rare condition that affects his ability to walk and talk. Neither of his parents have a genetic mutation, which makes his case even more unusual.
“Ethan is one of less than 500 known cases in the world,” said Kassondra. “He is one of three in Michigan.”
After being diagnosed at the University of Michigan, the family was referred to Columbia University which specializes in the degenerative and regressive disease, and were enrolled in a natural history study.
“The hard thing about this particular diagnosis, is because it’s so rare, there’s really no handbook,” said Kassondra. “There’s no playbook that’s going to tell us what he’s going to look like in five years.”
There is no treatment and no cure for KAND, which only recently received a recognized diagnosis.
“It’s made us have to look at life in a whole new lens,” said William. “Parents, especially the way things are now, you kind of expect to go through life with some sort of rule of thumb and know how things are going to go. You know when milestones are supposed to happen and then celebrate them when they do. You think: Probably by age 10 he’s going to play baseball. It’s a grieving process to acclimate to the reality that you have no playbook.”
Symptoms of KAND can vary from person to person and include seizures and lack of muscle tone and balance. Some people also experience neuropathy, a numbness in the hands and feet that can also present as a tingly, stabbing or burning pain.
In Ethan’s case, he is non-speaking and cannot express the pain he feels to his parents.
At four years old, Ethan wears braces on his legs and uses a walker or a stroller to move around. His parents have to lift him and carry him to and from his various appointments, which will only become more challenging as he grows.
When the Lamberts looked into purchasing a wheelchair accessible van they were shocked at the price. Such vans generally cost around $75,000, with the necessary modifications sometimes costing almost as much as the vehicle itself.
Kassondra, a social worker, has not returned to work due to the constant appointments to keep up with Ethan’s care. She said she was struck by how isolating the fundraising process is for wheelchair accessible vehicles.
“I quickly learned that there is no manual on how to fundraise for one of these things,” she said. “There’s no parent’s guide to fundraising out there. I really had to pave the trail in that regard.”
In September, the Lamberts launched their fundraiser with the goal of raising $66,000 for the van. To date, they have raised $37,000.
She said social media has been an amazing tool to both spread awareness for KAND and share her family’s story.
“It was really giving people insight into how I was feeling and how defeated I was and how I was struggling,” she said.
Through the fundraising process, Kassondra has decided to launch her own business, The Striped Stable, to help other parents navigate the often uncharted territory of fundraising for complex medical expenses.
“If I can save other families time by letting them know how to do certain things or teaching them how to use social media to connect with donors to help them get that financial freedom they’re looking for, then that’s all worth it to me,” she said.
To learn more about Ethan’s story or to make a donation, click here.