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Welcome to E’s fundraising page! Friends and family of E’s are raising money to fund a wheelchair-assessible van to transport him to and from his many appointments easily and most importantly-safely.

E is a happy three-year-old living in a small town in Michigan. In February 2021, E was diagnosed with a rare genetic illness, KIF1A Associated Neurological Disorder (KAND): KIF1A.org. KAND affects E’s ability to walk and talk, as well as his overall development. Because of this, he uses a walker and leg braces or a stroller to move. A safe, accessible van will allow him to stay in his stroller (and possible wheelchair in the future) instead of being lifted in/out of a car seat for appointments and trips.

Updates (23)

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.

Kassondra

September 6, 2022

Hello hello! I feel absolutely awful about not providing an update but we've been enjoying the summertime and living life!

We spent Labor Day weekend with family and had the most wonderful time relaxing, being in nature, and slowing down before the Holiday Season. This week, E starts back to school after last week's storm knocked out the power to his school. I'm telling you that there is nothing worse than a kid (and parents) who is excited to get to school but has to wait a whole week after his first day. Goodness. But, he's on the bus and I'm sure having a wonderful day with his class and teachers. My heart is grateful for that!

During the summer, fundraising for the van slowed down and I went on a side quest to get E an adaptive tricycle. We started the process in May and hit a snafu last week when I learned a grant that we were given had some processing issues. It caused a LOT of heartaches, as we wouldn't be able to afford the $7,000 bike without it, but I am happy to say I received a phone call on Friday that things were a go. Fingers crossed that this week we get a notification that the bike is shipped to our house! I know everyone would love to see him on a bike before the end of summer. Thankfully, this bike will also grow with him so we intend on using it for it's lifespan.

We are all ready to have our van. We've been advocating, advertising, praying over, and speaking life into it for the last year. Now, as the weather changes and our schedules have gotten busier, it seems we need to more than ever. I have taken to Facebook to ask friends to post our story and pictures to help us cross the finish line. Time is ticking, as the two grants we have been awarded are time-limited and will expire in just a few short months. It seems when you have a disabled child you're always racing the clock. Always.

Lastly, I just want to praise everyone who has followed our journey, shared our story, and donated to our fund. No one can live this life alone and that is even more apparent when you rely on the generosity of others because the costs associated with disability/chronic illness are unfathomable. People choose to share our journey and donate what they can every day and we are so incredibly grateful. We do not take that generosity for granted and hope that seeing our struggles and successes spark a larger conversation on how we as a society can better support families like ours. There is work to be done and it all starts with peeling back the layers and exposing the hard stuff.

Do Good. Be Well.

Kassondra

Photo Galleries (4)

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Guestbook

December 10, 2022

I am in your corner buddy.

Samuel Klahn

September 2, 2022

Much love from Brandon and Brianna Fry’s mum and stp.dad.

Jeanne/David Saddler

August 28, 2022

Sorry your going through this Brother Will. Prayers for E and your family.

Jared Opp