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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): KIF1A.org.
/> 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.
Insurance does not cover the cost of a ramp or home modifications as it is not considered a “medically necessity”.
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.
Thank you for your support!
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.
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.
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.
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.
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.
Happy gray Tuesday from Michigan! This month has been one of the more challenging months we've had in quite a while. Unfortunately, E tested positive for COVID last week. This was awful timing (is there ever a "good" time to be sick?) and forced us to miss Campily at North Star Reach. NSR is a beautiful camp in Michigan that provides summer camp experiences for children (and their families) who are unable to attend a traditional camp due to their medical needs. The pandemic forced them to postpone in-person camps for 2 years and this weekend was their first time back to "normal". They were so sweet and dropped off a care package full of fun at-home activities for us to enjoy. We were able to secure a spot for the fall family retreat, so not all is lost! Thank you, North Star Reach!
E is doing well, despite being sick for literally the last month. He is congested, has a cough, and is grumpy, but is otherwise ok. We had a small scare with some bruising and the possibility of low platelets, but thankfully, his bloodwork came back and the bruising is likely due to excess coughing.
I was recently notified that we are the recipients of another grant of an unknown amount and an unknown timeline. I hope to have more information on that opportunity as we get closer to hitting our goal amount and can announce the details when I have them. We are so grateful for the support of each and everyone who has walked with us through this season of life!
Thanks to a great article through WDIV/All About Ann Arbor, we were able to garner another $700 in support from generous readers and bring awareness to KIF1A Day (April 28th)! A huge thank you to Meredith Bruckner for picking up our story, having a wonderful chat, and helping us raise awareness about E's disorder and the insanity that are medical expenses. She was a pleasure to work with and we hope to continue our relationship in the future.
I continue to keep in contact with our van sales people- purchasing a van is comparable to a gold rush right now. Prices are sky high, used vehicles are almost as costly as brand new, and supply is extremely limited. There is a constant flow of vehicles coming and going from the market so it is unlikely we'll be able to put one on "hold". We aren't quite at our financial goal to be able to sit down with a dealer yet. For now, we watch, we wait, and we pray.
Thank you for taking time out of your busy day to check in with us and to stay updated on our journey. Time is our most valuable resource, sharing it is a gift.
Do good. Be well.
Holy smokes! And just like that we're $10,000 closer to our goal!
Yesterday I finally submitted a grant application to the Children's Special Needs Fund here in Michigan. It has taken me about 6 months to complete the application packet. It felt AMAZING to finally submit it! Little did I know...
Today I received an email that E was approved for a $10,000 grant from that fund! I have no idea how our packet was seen, let alone approved, that fast but we are celebrating and SO grateful! Our journey to wheel is now 66% complete!
Thank you all for your encouragement, well wishes, and heartfelt prayers. God is listening!
Do Good. Be Well.
Hello sweet friends!
Blessings keep pouring over us. While I've been unsuccessful at getting news coverage of our (over) halfway milestone, we've gained the support of a student organization at the University of Michigan. MedLaunch is a community of students at the University of Michigan passionate about healthcare and biomedical innovation. We were able to partner with them for a 2021/22 project. Our team is the KaChair team whose goal is to design, test, build, and open source a cost-effective alternative for pediatric mobility devices that allows independence for its users. This team is working with second-hand strollers and other low-cost materials to create a pediatric wheelchair prototype that can eventually be open-sourced and modified depending on the user and stroller. If you've followed our journey, then you know we've had to battle to get E his pediatric wheelchair (currently approved, but on backorder!). Our team of students has met with our family to design and fit E with a prototype to help foster his independence. Not only that, but they have taken action and raised funds for our wheelchair-accessible van! It has been an honor to get to know these bright minds and see their passion grow as they start to understand the cost-prohibitive nature of pediatric mobility devices. Team KaChair- we love you guys! You can learn more about their organization and projects here, medlaunch.engin.umich.edu .
We also continue to apply for grants to cover the cost of the modification to the van. It's a slow-going process, but progress is made. One of the most challenging hurdles of this process is sifting through the hundreds of Google search hits and vetting the organization offering the grants to make sure our family fits their grant requirements. I'm finding a lot of dead ends because our family is outside of the geographic region serviced, E doesn't have the medical qualifications, or the organization is no longer functioning. Nevertheless, she persisted.
We continue to look forward to all of the wonderful things coming our way! Thank you for keeping up with our journey and supporting us through donating and sharing our story. We daydream about our van and future roadtrips all the time. We can't wait to share the joy when we're finally able to turn the key in that ignition!
Do Good. Be Well.
Hello everyone! I am so excited to share that our fundraiser keeps growing. We have the coolest experience every Monday. On Mondays, I take E to speech therapy. His therapy office is located in a building with a few other businesses. I'm a creature of habit, so every time we park in the same parking spot and I help him navigate his walker across the parking lot and into the building. There is a medical office that has a large pane window that overlooks the parking lot. For 2 years, nearly every week, the staff at this medical office watched E cross the parking lot and through the doors. They are cheering him on and absolutely love him. While we were there a few weeks ago, I had some time during his appointment so I went and introduced myself to the team there. They were so sweet and had his name on a sticky note behind the admission desk to make sure they said "Hi Ethan!" to "the boy with the blue walker." I was able to take some time and explain why we go there, about Ethan's condition, and this fundraiser we're doing. Well, not only have they decided to contribute to our campaign, but they have also adopted E and now he has about 5 "aunties" that watch him and chat with him when we come/go from therapy. It's so wonderful to see their love for him (from an appropriate distance lol!) The kindness of strangers never ceases to amaze me. I am so grateful for this group and the compassion they show.
Overall, our campaign continues to see success! I am still applying for grants to cover the last bit of funds needed for the van. With grants, most have restrictions on what you can use the funding for. In the case of wheelchair-accessible vans, they will only cover the modifications, not the chassis or actual van itself. With the funds we have raised so far, we're only about $10,000 away from being able to purchase the van outright, then we're able to use grant money to cover the necessary mods. YAY!
I've learned so much about this process and am working on my first online course to teach other parents how to navigate this world of fundraising. It's hard work to be an entrepreneur and a mom/caregiver, but I know that all of the work to do so will help so many other families like ours and provide E with the best life I'm able- understanding that time is our most precious asset.
Do Good. Be Well.
What a whirlwind few weeks! We have so much to update you on. Today, we drove to Grand Rapids, MI to pick up a loaner wheelchair for E thanks to Alternatives In Motion. AIM is a nonprofit that provides gently used mobility equipment to those that need it. It was a wonderful trip and I am elated that E has a set of wheels! This will greatly help us out because the wheelchair is lighter than E's current stroller and enables his independence to navigate the world.
Two days ago was E's 4th birthday! We spent the day at an aquarium in the Detroit area. E seemed to love it and did really well navigating the exhibits with his walker. We got to see all sorts of fish, sea creatures, and even touched a starfish! It was a magical trip I certainly won't forget.
We continue to fundraise for our van :) I received a Letter of Medical Necessity from E's doctor which is a required part of a few of the grants that we are applying too. One less barrier to applying for more grants! Fingers cross and prayers please for more good news to come our way.
I've also added a few updated pictures of our recent adventures to the photo galleries so make sure to check them out.
Thank you so much for following our journey. It means the world that we have a whole community of people supporting and cheering us on.
Do good. Be well.
365 days since we learned that KIF1A-Associated Neurological Disorder (KAND) existed and our sweet Ethan has it.
As I sit here and relive, down to the hour, the moment my whole life changed, I am both shattered and rebuilt. The diagnosis that provided so much clarity also brought so much uncertainty. It was this experience that rippled throughout every corner of my life.
I met and fell in love with the KAND community (KIF1A.ORG). Strong-willed warriors fight the symptoms of this terrible genetic disorder every single day. Relentless parents fight for funding and research, bringing hope for a cure.
I met A Kid Again - Michigan Chapter who created beautiful adventures to Michigan's Adventure and the Potter Park Zoo free for our family to just be a family and forget our troubles, even if for only a few hours.
I met Help Hope Live, who helped me launch our fundraising campaign to get a wheelchair-accessible van (so close!). An organization I have come to hold dear to my heart.
It was through this experience that I started The Striped Stable to teach other families how to create a strong community on social media and pass along the fundraising knowledge I didn't know I needed until a year ago.
I met Alternatives in Motion, who have given us crutches for E to use as his balance gets better & are loaning us a wheelchair until his is delivered.
Plus all of you. Family, friends, strangers here on the internet. I am reminded of the sacred bond between humans as they experience emotions together. You've seen my ups, my downs, my tears, fights, and celebrations. I've had the honor of women telling me they are inspired to share their stories with the world. Thank you for being my people as I've experienced the most challenging year of my life, to date. For as painful as it has been, I can look back on the blessings too. I am excited to see where the next year takes us. It'll be a good one.
Do Good. Be Well.
Hello friends! I am so incredibly happy to share some joy with you all. Two days ago we received a phone call from the nonprofit Lori's Voice. Chris, our grant coordinator, told us we have been given a $10,000 grant to use towards the modifications of our van! This is an absolute rocket launch towards our goal. We are stunned and grateful. We are in the process of applying for a grant through the State of Michigan's Children's Special Healthcare Special Needs Fund among a few others.
The next 30 days will be tougher than usual for our family. We are navigating the year diagnosis-versary for Ethan's genetic disorder as well as his 4th birthday just a few days after that. We have so much to celebrate and be grateful for but we're also taking some time to reflect on the last year of our lives and the trials we have endured.
Until next week...
Do good. Be well.
I wish I had better news for an update. Updates like these always bum me out.
Last week, we received the formal phone call that Ethan's wheelchair was denied by our insurance. Reason? It would be primarily used outside of the home.
There are so so many things wrong with this and I'm sure you're feeling the same feelings I felt. Frustration, anger, disbelief. As if having a child with a debilitating disease wasn't enough, now I have to prove to random strangers that his incurable, progressive disorder affects his mobility to the point of needing a wheelchair to navigate grocery stores, offices, parks, and more. It feels like a slap in the face. I am offended. I am....tired.
But hopeful. I know he will get his $6,449 wheelchair one way or another. So many sweet friends and strangers have reached out offering advice and encouragement. It really takes a tribe to raise a child. Truly.
So, here's our plan. Step 1) Wait for the formal denial letter in the mail. Then we will start the appeal process. 2) Contact Medicaid to see if it is a benefit that they will cover (I was already told it would be denied by them too, but until I see it in writing, it doesn't exist) 3) Stay in contact with Alternatives In Motion (a nonprofit out of Grand Rapids, MI) to see if they can find us a loaner chair 4) Determine if insurance/appeals will go through and if not, fundraiser specifically for the chair.
Now, we are in fact VERY LUCKY that we have our amazing donations on this website, HelpHopeLive. While the funds we've raised so far have been earmarked for a van, a wheelchair is an approved expenditure as well. As a last resort, we can pull from this fund and pay for his chair. Do I like it? Absolutely not. But, I do recognize that we are beyond blessed to have had so many people rally behind us to give us the opportunity to pay full price out of pocket. So many families like ours do not have that option and I believe it is a privilege to have the ability to pay for the chair. I am simultaneously frustrated and feeling privileged at the same time. It's a weird place to be, trust me.
In the meantime, as we get this new mess all figured out, I ask that you share our story. Share our journey. Not just for us, but for all the families like ours whose page you haven't come across just yet. It takes a village.
Do good. Be well.
Good morning! This past week has been an absolute whirlwind. E has been down with an ear infection, making our schedule...well...non-exsistent. Today he heads back to school and we are all so excited! Last week, a local gym (shout out TRVFIT Pinckney/Dexter/Fowlerville!) issued a "buy out" of burpees challenge to raise money for E's van. Members donate different amounts to get out of doing burpees for January, February, and even March. I'm happy to report they've raised for $600 to date. Thank you TRVFIT P/D/F!
We received a phone call from UMich Wheelchair Seating Services and learned that E's wheelchair was denied by our private insurance and would be denied by our Medicaid as well. I'd be lying if I said I wasn't crushed. We are planning to appeal the decision and one way or another he will have the equipment he needs. I just wish I didn't have to fight so hard for basic things, like transportation and mobility aids.
Our fundraiser continues to grow and I'm still gathering grant applications. I had no idea applying for grants would be like applying to college all over again. Trackers, deadlines, forms, personal statements...the whole shabang. I've learned from most grant organizations that we should be applying once we're much closer to our goal. I'm learning so much.
That's the latest from our home. I hope you all are happy, healthy, and have a great start to 2022.
Do good. Be well.
Hello dear friends! It's with great joy that I can say our fundraiser continues to grow little by little nearly every day. This week I made a point to call around and gather more quotes on vans. The prices continue to rise. I have some leads on a few gently used vehicles with new conversions. "Conversion" means the equipment and labor of making it wheelchair accessible. It's very important to have a new conversion because many of the grants we're applying for only cover new conversions. Additionally, grants specify the year and mileage limit for a used vehicle. Sometimes this search feels like looking for a needle in a haystack. I know the right van at the right time will show up, but waiting and having faith is difficult.
E went back to early childhood special education this week and adjusted well to getting our groove back. He seems healthy, which is a huge blessing and a great way to start 2022! We continue to work with his speech therapist on paperwork to get him a talker device so we can communicate better. Having a son who can't tell you if he's in pain or where it hurts can be really hard sometimes. The talker will help with that.
I'd like to share a podcast with you. Luke Rosen is one of the founding fathers of KIF1A.org- the foundation that is spearheading clinical research of the disease E has. Luke's daughter Suzanna also suffers from KIF1A. He explains his story, the foundation story, and a tough bump he has had to face in the last 12 months. Give it a listen here :
Thank you for continuing to watch our journey unfold. Our family is so incredibly grateful for your ongoing support and love. Literally, we couldn't do this without you.
Do good. Be well.
I hope each and everyone one of you has had a beautiful holiday season so far! I know it's been way too long since our last update so here's what's new in our household:
We had a wonderful Christmas holiday spent with a few family members. E is the only grandchild on both sides so you know he is absolutely spoiled beyond belief.
E spent the first week of holiday vacation sick with a stomach bug that his Dada then caught. Fingers crossed we are all healthy going into the new year!
We rescued a kitten from under our snowy front porch on the Saturday before Christmas. Our home was very pleased to have such a sweet fur baby for his 36 hour stay. I'm happy to report he has a clean bill of health and was adopted out through our local animal shelter.
Through holiday giving we have surpassed the $30,000 donation mark! I have called around the country to get additional quotes for Honda Oddessy's. Unfortunately, the 2021 model is hard to come by so we're being quoted with 2022's to the tune of $86,000. That is more than we were initially planning to invest. In case you're wondering, yes, you can get a 4 bedroom, 2 bath home in Michigan for that price. Oy.
As we go into the new year, I've had many people ask how they can help beyond donating. One of the most powerful tool's we've seen is social media. Please consider sharing our fundraising page on your Facebook wall and typing a bit about why getting E a van is close to your heart. Additionally, you can start your own fundraiser on Facebook or Instagram in honor of E! To set it up, follow the steps & the link below, making sure to title the fundraiser "Help Hope Love Fundraiser in Honor Of Ethan Lambert".
Thank you again to each and every one of you who have contributed. Whether it's financially, sharing our story, or praying for us- we are grateful for the continuous amount of support we receive.
Do Good. Be Well.
Click here: www.facebook.com
*Make sure to change the title to "Help Hope Love Fundraiser in Honor Of Ethan Lambert" to ensure donations are received on his HHL page! *
Goodness, gracious. What a whirlwind of a month. E spent the entire month of November sick with various illnesses; a double ear infection, upper respiratory infection, and finally impetigo. If you're not familiar with the latter, impetigo is a highly contagious and very common bacterial illness that causes itchy, red rashes. Unfortunately, E's case was so bad we ended up in the pediatric ER for a very long, very tiring night. I'm happy to report that after much R & R he is back to his old self, albeit a bit more polka-dotty. Fingers cross those spots fade in the coming weeks.
On a much MUCH happier note, #GivingTuesday was such a success for our campaign! We are officially over half way to purchasing our van (without modifications) outright. This is a HUGE development for us. We've been relying on one vehicle for going on two years and I dream of the day that my husband can be at work and I can take E to his appointments without worrying about car swapping.
Thank you to each and every one of you who has donated to our van fundraiser. Whether you have monetarily contributed or shared our story on social media or through word of mouth, you have a direct impact on our son's life and we are truly thankful.
Do good. Be well.
What a crazy past few weeks! I do wish I had amazing news to share about our absence from providing updates- but, alas, it's been just another adventure in parenting a disabled child. Our latest adventures include finding a new company to provide an AAC (Alternative Augmentative Communication) device, as our last company has taken nearly a year to complete and submit funding paperwork to Medicaid. We're also fighting with insurance to get E's newest pair of leg braces to be authorized and covered. Someone, somewhere, signed a form and didn't note "electronically signed" so we're left waiting an additional 4 weeks for that to be resubmitted. Meanwhile, the braces have been made and in the possession of our orthotics provider. We're also problem solving E's bussing situation- his morning school bus was recently upgraded to a brand new one, however, our driveway is so much lower than the paved road the wheelchair lift doesn't deploy properly. Life feels really hard right now.
Not for E though- he is happy and finally healthy after a bout with a bad cold. Last night in the bathtub, he really seemed to grasp the concept of pouring and believe me we celebrated that milestone!
Donations are still trickling in and we are so grateful. Every day I think about how this van will change our lives. We've even started talking about planning more trips to explore our great state of Michigan! Adventure looks a lot different when you're not packed together like sardines in a can.
Did you know November holds the one and only world-wide donation day? This year, Giving Tuesday is on November 30th! Please consider sharing our story in the weeks leading up to Giving Tuesday as well as on the actual day. Sharing our story is just as important as donating! There are so many families just like ours who are in need.
Do Good. Be Well.
Yesterday, E had his very first field trip! Bussing was not supplied so I drove to the local cider mill/apple orchard. I wish I had some great story to tell about how it was an amazing trip and I'll forever look fondly on it. Unfortunately, that's only partly the case. Being outside with natural terrain, it was necessary to bring his medical stroller. I appreciate it because it keeps him safe, however, I curse it every time I deadlift into the back of our Equinox. The internet says it only weighs 44 lbs but it feels like WAY more.
But, we made it to the orchard and I was able to push him around throughout the venue. We picked pumpkins and apples and naturally ate cider and donuts. It was a beautiful day and overall an experience I know so many parents pray for.
We are SO excited for our first in-person fundraiser this Sunday, 10/17! Yoga with Goats only has 16 tickets left and we hope to see a packed field on the forecasted sunny day. We are working to have some more in-person events before the end of the year so keep checking back for announcements.
Finally, a moment of gratitude. I check our page daily, multiple times, and every time I see our thermometer climb my heart soars. This adventure, for me, started as a means to be able to drive E safely to his appointments but has become window into the hard realities families like ours face. I know in my heart that many amazing things are coming, beyond the van, and I am so grateful for the opportunities I don't yet know about- all because of your attention and support. So thank you, Reader, for choosing to peer into our lives, learning about our world, and supporting us throughout our journey.
Do Good. Be Well.
Another week and some more wins! We continue to see support from our local community (and beyond). I can't explain how unreal it is to check our fundraising thermometer and see it continually grow. This week we were reminded how frustrating it is to stand in the rain while waiting for the school bus and how we will cherish sitting inside the van, warm and dry.
We're gearing up for our first in-person fundraiser, Yoga With Goats! Of course we're a bit nervous but looking forward to seeing everyone safely. Have you ever done goat yoga? I haven't. It will be an adventure for sure! If you haven't grabbed your tickets yet, click the link under "Fundraisers" to get more information. Tickets are limited!
Have you wondered what goes into modifying a van to make it wheelchair accessible? Check out this video from BraunAbility (one of the leaders in modifications)! I'm a visual person and really appreciate the graphics to better understand it all.
Do Good. Be Well.
I can't believe another week has gone by. Thank you to each and every one of you who have reached out, shared our story, and contributed to our fundraiser!
Last week E had another leg casting for a new set of leg braces. He is on his 4th set and gets new ones about every six months. While we are so grateful that insurance picks up the tab on the braces, they don't pay for new shoes. His shoes cost $50-$100 per pair every six months. Just another reality of our world.
We have physical therapy today and anticipate discussing the purchase of a wheelchair for E. Right now, he walks short distances with a walker. He isn't very stable due to balance and possible cognitive issues so we've decided to pursue a wheelchair to allow him to safely explore his environment and provide the independence a typical 3 year old has. I'd be lying if I said it wasn't painful to see your toddler in a wheelchair. Living in a place of appreciation for mobility and heartbreak for lost "normalcy" is a tough spot to be in. For now, he'll still use his medical stroller to get to and from school as well as go long distances (like a zoo or event).
I'm holding out hope we can get this van before the new year and the snow. But, whenever it ends up being a reality- we will be ready and grateful.
Do Good. Be Well.
Kassondra (E's mom)
Holy moly. Today has been an absolute whirlwind. 11 hours ago, I received a local news agency call asking if they could swing by for an interview. We were able to squeeze one in between school and E's speech therapy appointments and I am so glad we did. In 24 hours we've doubled our progress towards our van! Social media is abuzz with messages of hope & congratulations.
Right now, I'm taking a moment to reflect on this crazy life. In August 2016, E's disease was discovered by science. In 2018, E was born. In 2019, we had our house fire. In 2020, well...we all know what happened in 2020. In 2021, we received our official diagnosis and it forever changed our lives. Now, here we are with a beautiful community surrounding us with open, loving arms. Humbled and grateful are we.
Do Good. Be Well.
Hello and thank you for finding our fundraising page!
This journey has been nothing short of life-changing. Our family has been so blessed to have a wonderful community, both online and in person, rallying around us throughout E's short life. Please know that even the fact you have viewed this page has a big impact on our goals of funding his accessible van, bringing awareness to this awful disease, and finding a cure in his lifetime. So...thank you. We're grateful you're here.
Here is a bit of history on our story-
E was born full-term and healthy, nearly perfect in every way (as his mother says). Shortly after his first birthday, we noticed he wasn't meeting his developmental milestones anymore. He started Early Intervention services, was referred to his first specialist, and started physical and speech therapies. This would be just the beginning.
No answers were found, however the possibility of cerebral palsy was discussed. E continued to make small incremental progress in his therapies, but would not catch up to physical and speech milestones of his peers. Another referral to another specialist was made and he continued his therapies. This specialist formally diagnosed E with cerebral palsy, but was unconvinced that was truly the cause of E's struggles. Yet another referral and another specialist, this time a geneticist. Through genetic testing, it was discovered E has KIF1A Associated Neurological Disorder or KAND for short. This disease is caused by a genetic mutation in the KIF1A gene (in E's case, a completely random and not hereditary mutation). This mutation affects about 300 people worldwide and causes issues with balance, strength, and eyesight to name a few. It is considered progressive and degenerative, meaning symptoms will get worse over time. Additionally, there is no known treatment or cure.
Due to this disease, E walks with a walker, has leg braces, is nonverbal, and is currently learning how to communicate with a communication device. He is at higher risk for seizures and eyesight degeneration. E attends special education, physical, occupational, and speech therapies weekly.
Despite his limitations, E is full of personality! He absolutely loves water (a plus when living on a peninsula), chicken nuggies, Cocomelon, and the word "NO". He is very curious and is constantly exploring and pushing boundaries. He is kind to his golden retriever (Mina) and kitty cat (Mr. Bitey). He is loved by many.
Thank you for reading a bit about our lives. It is not easy to share the hard realities of this disease, the unknown, nor the painful side of raising a child with a disability in this world. For you, Reader, we are grateful.
Please consider hitting the give button and making a tax-deductible donation to fund E's van! If you are unable to donate at this time, please consider sharing our page on social media to help us hit our goal faster and raise awareness for all of the other families just like ours who experience the effects of KAND daily.
Do Good. Be Well.
Kassondra Lambert, E's mom
I am in your corner buddy.
Much love from Brandon and Brianna Fry’s mum and stp.dad.
Sorry your going through this Brother Will. Prayers for E and your family.
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.
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!
God be with Ethan and your family. Prayers for continued strength and guidance.
The Henke Family
Sending all the love for your sweet baby boy!!!
What a precious little guy!❤️
Happy birthday, Ethan. You have incredibly strong and caring parents. Sending much love to you.
Happy Birthday E! You are one amazing little man!!!
Hats off to Ethan's remarkable parents who are tireless, fearless, warriors on behalf of their little champion! And hugs to Ethan. You all are not alone!
Joan Steltmann, CEO Bounce Children's Foundation
TrvFit burpees for Olivia and Dianne Bishop! Love you girl!! ❤
Encouraging all my friends to contribute. Realize every little bit helps this beautiful little boy.
Trufit supporter!! You got this!!
Thoughts.and prayers are with you and your family!
TRV FIT takes care of their own.
Hope you get your van!
Some days the fight is hard, look at his smile and remind yourself he is worth more than any dollar amount. He is more than a price tag, a disease, or a number. Keep taking good care of him, Momma. You are doing wonders
God bless Ethan and your family. I love you guys.
We hope this contribution will help you continue to provide needed support to Ethan. Best, Dan and Jessie
God Bless. We'll be praying for you.
Sending Love From St Joes Ann Arbor NICU
Ethan will be in our thoughts and prayers. He's such a cute little boy!
-John, Ben and Andy Curtis
John, Ben & Andy Curtis
I will share this campaign with friends and family. Big hug.
Happy to support a great cause!
Love and hugs sent to the Lambert Family❤️
Anne Elise Mair
Ethan, may God bless you and your family!
Praying for you buddy!
Can’t wait to see Ethan on his new wheels!
Goat yoga fundraiser donation ♥️
Nicole Paige ( the goat yoga)
Ethan's a sweet boy, and I love your tenacity to campaign on his behalf! God knows, I wish I could contribute more. Let's keep the love flowing!
We are rooting for you Ethan!
God bless you Ethan. I know He has a special plan for your life. :)
My prayers are with you.
Wishing Ethan and his family the strength they need to cope with the difficult situation. Never lose hope or your positivity.
We were able to get a retro-fitted van for my mom and it made such a difference in her life. I truly hope you are able to secure one for Ethan. Blessings to all of you.
God bless this family
Ethan is in my daily prayers.
My heart goes out to you. Stay positive and strong.
I am praying for Ethan and your family. May God guide the doctors toward his healing and help your family be strong.
Ethan is an amazing child..he deserves this for sure!
Wishing you all the best in your battle with this disease. I hope this small donate helps to add to everyone’s generosity and that you are soon able to get this accessible van and more that can assist you and your son.
Keeping your beautiful family in our prayers and can't wait to see you driving around in a new van!
Mike & Angelle Batten
So much love to you and E
God’s Blessings to sweet Ethan and his family.
Keeping you and your family in our prayers.
Go Go Go!!!!!!!!
We miss seeing you Kassandra and Ethan. I hope you will raise enough for your vehicle. We've been thinking about you and sending prayers.
Frederick and Jennifer
I been cheering this little man E on for a while now!! I know its not much but anything helps!! Much love to E and the parents whom do ANYTHING for him!
God bless you and your family!!
Ethan and your whole family are in our prayers ❤️
Go Ethan! Glad we can help
May you be blessed with all you need and more.
Ashley Waddell Tingstads
Sending prayers for Ethan. May God watch over and protect him.
Prayers sent to Ethan. May god watch over you and help heal you.
With love and support
God be with all of you.
Best wishes for Ethan from Uncle Art & Aunt Paula
What a cutie!! Sending only good wishes to your family!!
Prayers for the family.
I thought you might be interested in this information so I sent you a link. I hope it helps!
in memory of my nephew Vito
On and Ever Upward
My granddaughter has a rare epilepsy. Please know you are in my prayers. I wish for you comfort and peace, and the strength, love, and determination to get the help you need. May your love for each other give you strength to face this together. God bless your family.
Sending a hug
God be with you!
Robert J Miller
Best wishes to Ethan and family.
Wishing you success with this campaign!!
Prayers for Ethan and the Lambert family
Sending all well wishes to this family and amazing little boy!
We wish Ethan Lambert and his family all the Best! ❤️
E is so lucky to have a mom that will fight endlessly for him. Best wishes for the future and good luck reaching your goal!
Kassondra, everything you have done as a parent, a mother, is nothing short of amazing!! You are seen, you are heard and I’m here for you any time you need anything. And, E, you are so awesome. You truly are a child superhero!!! Keep rocking it you guys
Big hugs, Lambert family! ❤
Richard A Wasek
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Ethan M Lambert
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087
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