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Welcome to E’s fundraising page! Friends and family of E’s are raising money to fund a wheelchair ramp and home modifications so he can enter his home easily and most importantly-safely.

E is a happy five-year-old living in a small town in Michigan. In February 2021, E was diagnosed with a rare genetic disorder, KIF1A Associated Neurological Disorder (KAND): /> E’s neurological disorder was caused by a random gene mutation and he is 1 of 500 diagnosed worldwide. KAND is progressive and degenerative with no treatment or cure. Because of this, he uses leg braces and a walker or wheelchair to move. A safe ramp will allow him to enter the home on his own and gain independence.

Updates (24)

March 16, 2023

Can you believe that life got so hectic I couldn't bring myself to write an update? But. Here we are.

Shortly before Christmas, we were able to purchase a 2019 Honda Odyssey outright thanks to the many donations we've received from friends, family, and strangers as well as grants from Lori's Voice and the Children's Special Needs Fund. We did it. All of us. I am elated to say that E loves his new ride and is working on (to my horror) rolling himself down the ramp without help (or any sense of danger...).

Shortly after the first of the new year, we learned that E is losing his vision. My sweet baby is going blind. This is due to his genetic disorder and it is expected to progress over time. E, to no one's surprise, hates the doctors and medical tests. After months of thought and a recent discussion with other parents of kiddos with KAND, we've decided not to continue seeking specialists for his vision and do our best at supporting him at home and school. We'll work on neuroplasticity to help his brain "fill in" the "missing" parts of his vision.

Recently, I took a trip to DC (thank you Everylife Foundation!) to advocate on Capitol Hill on behalf of myself, my son, and the other 30 million Americans with a rare disease. I was able to learn about current legislative initiatives benefiting the rare disease community, how that impacts the scientific communities, and how we can accelerate the FDA orphan drug approval process to get treatment or cure to the 95% of the community that doesn't have hope.

I have also been pouring my soul, as best I can, into my company, The Striped Stable. It's my goal to teach caregivers how to find grants and funding for medical expenses not covered by insurance. I'm teaching other caregivers how to do this very thing. Please imagine me riding on the front of a runaway train while laying each individual track piece just as I need it, Looney Tunes style.

In February we celebrated his 2 year Diagnosis-versary. We choose to view it as a day of celebration because there are millions of families who never learn the "why" behind their symptoms. Our usual tradition of an overnight stay at a local hotel with the perfect pool for E was dashed thanks to a broken pool/hotel boiler. We spent the day with one another at home, a welcomed break from the busyness of life.

We are back to the grind with fundraising so our home can be more accessible to E. Now that he has grown, he is enjoying what independence he has and we would like to support that as much as we can. Our newest goal is to make a safe path so he can walk or roll from the bus stop (our driveway) to our front door. We think that's a pretty reasonable goal for a 5-year-old, don't you think? I'm off to find a contractor!

Do good. Be well.


December 11, 2022

What a year it has been.

We've been fundraising for 15 months straight now and our current total (donations and grants) is about $65,000! That is absolutely mindboggling to us. When we started this in September of last year, we made sure to know exactly what we wanted. We went to an accessible-vehicle dealership, met with a saleswoman, sat in a 2021 Honda Odyssey, and took it for a joy ride. We needed $75,033.20 to drive it off of the lot.

If you've been keeping up with world events since September '21 you'll know all sorts of unexpectedness has happened since. Because of this, shopping for a van has been like trying to find a needle in a haystack. Exhausting to say the least.

The news everyone's been waiting for. We have picked out our top two vans to choose from and will be purchasing in the next two weeks!!!

Here's the catch- we're short to pay-in-full. Just a small amount! About $5,000.

Can I be a mom for a sec? Thanks. I am absolutely weary of fundraising. I dream of being paid to teach families like mine how to do this very thing. How to fundraise through social media/the internet. *Ironic* But I can't teach someone how to build train tracks if I'm actively laying the track just one section before the train derails. The truth is we will probably be fundraising throughout Ethan's life for his needs, the cost of taking care of a disabled person in America is just too great. For us, one last hurrah before letting the chips fall and moving on with the next chapter of our lives...and a TON more road trips!!!

So here's to a final fundraising push, angel donor, corporate match, and hustle as we try to make Ethan's van a paid-off reality for 2023.

Do Good. Be Well.


Photo Galleries (5)

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August 16, 2023

Thank you for your inspirational message at St. Paul's. God bless you and your family.

Sally Chan

Sally Chan

December 10, 2022

I am in your corner buddy.

Samuel Klahn

September 2, 2022

Much love from Brandon and Brianna Fry’s mum and

Jeanne/David Saddler