Kai’s Original Story – May 25, 2021
2.5 years old
Maryland, USA
Warrior #116
(See Kai’s Updated Story below)
Kai received his SYNGAP1 diagnosis October 30, 2020. Our questions had finally been answered, but the answer was one we never imagined. Kai’s diagnosis came from a genetic epilepsy panel which was conducted after seizure activity was confirmed by an overnight EEG in May of 2020. Unfortunately for Kai, his seizures have yet to be controlled by medication. Kai has myoclonic, atonic and ansense seizures. He currently takes 4 different anti-seizure medications. On a good day Kai will have anywhere from 3-5 seizures an hour. On a bad day it’s closer to 10-12 an hour. For Kai though, everyday is a good one. He is the happiest, silliest, and sweetest boy. His infectious laugh and heart melting smile will put a spell on you every time!
Similar to many other Wednesday Warriors, Kai’s journey to a diagnosis of SYNGAP1 began with an unmet milestone. For Kai it was his lack of interest in eating, as well as what seemed like a struggle to chew and swallow. At 8 months old, our pediatrician recommended reaching out to an early intervention program. Kai has been working with that program ever since. At the end of this month we are hoping to transition Kai into our county’s PreSchool Special Education Program, also known as PEP. Just a couple of months ago Kai was able to begin his first in-person Physical Therapy. He absolutely loves it! We are hoping to begin in person occupational and speech therapy as well.
Kai loves cars, guitars, water, learning sign language and animals (especially his fur sibling). I’m still trying to get over the fact that Kai can clearly say and sign “kitty cat” but “mama” only seems to emerge from a cry. Of all of Kai‘s favorite things, number one is people! Especially his people; incredibly loving and supportive grandparents, uncle and aunts. The two coolest cousins a kid could ask for and the best big sister to always look up to. Kai absolutely adores his older sister Rylan. They spend their summers together splashing around, building forts and playing hide and seek.
Kai continues to make progress even though his seizures try to hold him back. He is already so determined and strong willed and he is only almost 3! He brings so much joy to every life that he touches and the world is a brighter better place because he is in it!
Kai was featured in an Instagram post by Kennedy Krieger Research on Rare Disease Day, February 28, 2025. See it here.
Kai’s Updated Story – March 29, 2025
6.5 years old
Maryland, USA
Warrior #116
This week, we’re celebrating Kai, our 6.5-year-old warrior, who continues to amaze us with his growth, determination, and vibrant spirit. Now in first grade, Kai is thriving in his special education program, Living for Independence (LFI). He’s building new skills and making the most of every opportunity to connect with others, especially his classmates and teachers. And, of course, he loves to join in the fun with his general education peers for specials, field trips, and school events, where his enthusiasm shines brightly.
Kai’s love for people, especially his family and his best friend Makenzie, continues to be a driving force in his journey. Socializing, though sometimes challenging due to his unique way of communicating, is something Kai is working hard at. Whether he’s seeking attention, wanting to give a hug, or just joining in a conversation, his affectionate nature makes everyone around him smile. He’s been learning more about personal space and respecting boundaries, and his growth in this area is a testament to the support and care he receives from his family and teachers.
One of Kai’s major successes this year has been his communication. With the help of both sign language and verbalization, Kai has made great strides in expressing his needs, thoughts, and feelings. It’s clear that Kai is incredibly smart and shows his intelligence in the most creative ways. From his love for coloring to his fascination with garage doors, every day brings a new discovery for Kai and those who get to be part of his world.
Kai has also shown remarkable progress in his therapy sessions. He has been attending occupational and speech therapy since he was two years old and is absolutely thriving in these sessions. His love for therapy, especially his weekly visits to the center, has only grown over the years. This year, we’re excited to add new therapies to his schedule, including Equine Therapy and ABA Therapy, which will offer even more opportunities for growth.
A highlight of the past year was Kai’s time spent at his grandfather’s new pool. While he’s not quite swimming independently yet, his confidence around water has soared, and we are excited to see his continued progress in the water. When Kai isn’t enjoying water you can usually find him behind the wheel! Like his father, Kai has a passion for cars or pretty much anything loud and fast. Water, cars and music have been his favorite things for the last couple of years. One of my favorite things is witnessing him experience something new that he enjoys. This year it was amazing to witness him find a new love in rock climbing. Not only does he truly enjoy it but he is really good!! We are hoping to join a local climbing team that competes with the special Olympics.
However, every journey has its challenges, and for Kai, some of the toughest moments come from frustration—often due to the difficulty he experiences in communicating his wants and needs. Transitioning between activities or places can also be a trigger for behavioral challenges. Yet, through the hard work and dedication of his family and team of professionals, Kai continues to push forward, learning new ways to navigate these challenges.
Kai’s journey is one of resilience, growth, and love. He shows us every day how to approach life with joy, perseverance, and a heart full of affection. We couldn’t be prouder of the progress he’s made, and we look forward to all the milestones still to come. Keep shining, Kai—you’re a true warrior!
