Ethan Lambert

Welcome to our fundraising page

This page started years ago as a means to purchase a wheelchair-accessible van for my then-toddler son. Through the kindness of many many strangers and loved ones, donations, and grants, we were able to purchase a used van outright for Christmas 2022.

Unfortunately, we continue to rely on fundraising due to the complex and porous nature of American health insurance and public policy.

Common sense needs, such as doorway widening or a ramp out of a home, are not covered by any support system in our state. Occasionally, the state will make grant funding available but that is subject to budget approval and depletes quickly. Sometimes before year-end.

Additionally, cuts to public programs like Medicaid, directly impact families like mine. Medical treatments and devices, such as leg braces, may no longer be covered by public health insurance. Our private health insurance does not cover leg braces and the cost is estimated to be thousands of dollars out-of-pocket.

Now, we’re preparing to be able to care for him to the best of our ability for the rest of our lives.

Here is a bit more of our story:

E is a happy almost 7-year-old living in rural Michigan. After years of appointments, doctors, and tests, E was diagnosed with a rare genetic neurological disorder; KIF1A Associated Neurological Disorder (KAND): https://KIF1A.org.

KAND is progressive and degenerative with no treatment or cure. It causes neurological and motor impairment and presents differently in each case. E uses a wheelchair and walker to get around, has a modified diet and curriculum, and requires medication to prevent/reduce seizures and muscle spasms.

As of Feburary 2025, research funding in America has been affected and the future of the research is unknown.

To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

If you’ve made it this far:

Thank you for sharing a bit of your time with us, it is our most precious asset. Even if you’re not in a place to donate, we would appreciate it if you could share our story. Eternally grateful, Kassondra (mom)