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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 (1)

September 14, 2021

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

Photo Galleries (3)

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Guestbook

September 16, 2021

Wishing you success with this campaign!!

Nicole Fitzpatrick

September 16, 2021

Prayers for Ethan and the Lambert family

Michael Rosinski

September 16, 2021

Sending all well wishes to this family and amazing little boy!

Carissa Funk-Wojciechowski

September 16, 2021

We wish Ethan Lambert and his family all the Best! ❤️

Anonymous