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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 (21)

June 22, 2022

Oh my goodness. I can't believe it has been a whole month since our last update! It seems like everything and nothing has changed.

E finished school and has since started an Extended School Year (ESY) program through his school district. I am disappointed with what has been offered to him and I am in contact with our local ARC (dev. disability org) to discuss an educational advocate. I had assumed his school would have a structured program that he would be participating in (something with a class and a teacher) however, that seems to not be the case. They are providing 40 minutes of 1 on 1 instruction for 8 sessions throughout the coming weeks. ESY is designed to maintain the level of progress that E has made up until this point. I don't agree that 40 minutes of instruction will maintain his skills until he starts again in the fall. In fact, his bus ride is longer than the instruction time offered. Just another thing to advocate for.

A few days ago we had the opportunity to go to Michigan's Adventure thanks to the amazing organization, A Kid Again. They sponsor events for kids (and their families) so the families have a chance to spend quality time together. E absolutely LOVED the water park there! There is a small tots area, which is perfect for his age and functioning level. He enjoyed sliding down slides with his Dada and splashing in the shallow pool. Memories were made that day!

Yesterday, we picked up E's first official wheelchair. We have been using a loaner for quite some time, and finally after 7 months we were able to take his own home. This has been a long road (no surprise to us there) after fighting with insurance (because they said it wasn't "medically necessary"...but his doctors prescribed it so...why does insurance get to practice medicine?) we were able to pay partially out of pocket and have our secondary insurance cover the rest. It is a beautiful small wheelchair that is green and blue and has a small headrest and core stability wings. It will be used on the bus for him to ride in and he had his first successful trip this morning. So, we finally have a wheelchair, now we just need the van!

It seems that donations have slowed down this season and that is tough to see. We are really close to our goal- with the donations and the grants we've received, we are about $10,000 shy from being able to pay in full for the van and it's modifications! I do have to acknowledge how amazing this journey has been and I am grateful for all of the wonderful people we have met. Without them, none of this would be possible.

We've printed up flyers for our local pizza places to hand out with their orders and are hopeful that will get the wheels rolling (see what I did there) to create some momentum.

If you've made it this far in our update, thank you. I never imagined my son would need a wheelchair, let alone a whole stinkin' van to be able to safely (and logistically) participate in the world. With our community rallying behind us, we will achieve our goal, together.

Do Good. Be Well.

Kassondra

May 18, 2022

What a whirlwind of a few weeks it has been! E has mostly recovered from COVID, though it seems he has a nasty cough that he cannot shake. It's not constant, thankfully, but when he does have a coughing fit it rocks him to his core. Last night, he woke up around 11p coughing. I went into his room and sat with him while he tried to get comfortable. That was the first time I've seen him so uncomfortable and frustrated that he was holding back tears. Honestly, it broke my heart. My sweet baby boy was doing his best to "keep it together". Oof.

Summer is fast-approaching and we are sorting out the details of our schedule change. Tomorrow we have a meeting with the school to discuss summer school. I expect a fight, because that's what this life is. I've already been told they don't provide transportation (bussing) but that is a non-negotiable for us, as we only have one car and my husband uses it to keep his job. Pray that we don't have to fight for bussing to get E to summer school and they get something in place for us. Please.

After 11 weeks of calling (yes, really) E's wheelchair has been delivered to the clinic. Just a reminder- he was fit for a chair back in Nov '21, we fought with insurance until March '22, and it was delivered to the clinic in mid-May. It will still be a few weeks before we will be scheduled to go to the clinic and actually sit in the chair. No one can tell me why it has taken as long as it has, so I've been doing A LOT of talking to the Lord with some choice words. Luckily, He takes me as I am. Thank God. (literally).

This past Friday we attended Bike Day through Mott Children's Hospital. It was a magical experience! We were able to watch E RIDE A BIKE! Of course it was an adaptive bike, but he pushed the pedals and steered all on his own. I will never take these milestones for granted. For once, he was doing something "normal" 4 year-olds do. My heart swelled with joy watching this core memory-in-the-making. Of course, like everything in our world, the tricycle is expensive ($5,600) and not a "medical necessity". I've already sent off two grant applications so please send us lots of prayers and well-wishes! I would love for my little boy to have the experience of riding a bike.

Our van fundraising efforts have slowed down a bit with everything that has been going on, and that hurts. I want to give E everything he deserves, but I am only one person. I know that if I get burned out, I am no good to anyone (E included) so I am trying my best to stay even-keeled, run my business, advocate, play, and show up for my husband and son. This is a marathon, not a sprint.

Thank you so much for being a part of our journey and keeping up with our family. It means the world that we have so many rooting for our success! I am grateful for you, every day.

Do good. Be well.

K

Photo Galleries (4)

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Guestbook

June 24, 2022

Kassondra, Will and Ethan have struggled to navigate the challenging circumstances of Ethan's condition, the KIF1A Associated Neurological Disorder and create as normal an atmosphere as possible for this young boy to live his life. I learned about Kassondra and Will's struggles with the medical and insurance industry when had her as a guest on my podcast. If you can spare, please give. I'm happy to help even in this small way.

christian ward

April 18, 2022

This terrible disease could happen to anyone; my wife and are a happy to do this small part to support the family. God bless you!

Anonymous

April 18, 2022

God be with Ethan and your family. Prayers for continued strength and guidance.

The Henke Family

Christina Henke