HADDS Family Views

Updated: Jul 8, 2019

By: Ivette, Shane, JT & Kai Sepersaude



(L-R) Kai, JT, Ivette, Scarlett and Shane

I am his mother: The best way to phrase my journey as a special needs mother is “paving a way towards hope with pieces of shattered heart.” When the word “HADDS” first left the lips of Kai’s geneticist and entered my ears, it felt like a loud jolting ring that I just couldn’t shake. After years filled with days of heart shattering pain followed by days of acceptance rounded out by days of denial, this was now our “normal.” Life before a diagnosis was different. Praying those profound delays would be conquered, low tone muscles would miraculously be healed, and ASL signs would magically turn into words of conversation. I knew my son had special needs, yet the instant he had an official diagnosis my universe came to a halt. My body entered fight-or-flight. I could feel my heart racing, my breath labored, my hands shaking. It happened again... shattered heart. No worries, those broken pieces always find their way back to hope. You would think by now that my heart was made of steel. In lieu of steel, my heart consist of the joy I felt like when he spoke his first word, the tears I shed when he stood on his own, the inspiration he gives me with his courageous heart. There is an endless amount undiscovered beauty on this journey, copious amount of experiences that we have yet to encounter, and an abundance of amazing people to meet along the way.




Kai watching the ocean waves.

I am his father: “Kai”means the Ocean. Like the ocean, this journey is deep, unpredictable, but ever so beautiful. HADDS didn’t change who my son is. He will always be the little boy who attains the unattainable. He lives his life with purpose and inspires me to conform. He enjoys the little things like sitting on the beach watching the waves, listening to music while spread out on the hammock, and candle lit dinners per his request. Those precious moments we tend to let slip away, he experiences them as if they were in slow motion. Despite the challenges HADDS has caused, he learned to highlight the beautiful parts of life. Perhaps we traded baseball practices for occupational therapy and dirt bikes for adaptive equipment, yet the excitement and proud dad moments remain. He taught me the significance of living in the “insignificant.” He is a gift that keeps unfolding every waking day, with every hug, every goal achieved, and every day he fights with all he has.



Brotherly love, JT carrying Kai.

I am his brother: My little brother, Kai, is my inspiration. I carry him when he needs it, he hugs me when I need it. Everyday after school I pick Kai up and take him to therapy. He never complains about going to PT, even when I can see his legs are tired. He never hesitates to get on the horse at HIPPO therapy even though I see his hands shaking when he holds the reins. He has never known life to be different, therapies and doctors appointments are just a part of life. Every car ride together we listen to music. He rocks his head back and forth while flapping his hands. He’s happy, he’s whole, he’s my inspiration.



Kai sporting his inspirational t-shirt!

I am “him”: My name is Kai. I am 12 years old. I use a wheelchair and wear leg braces. I have a hard time expressing my feelings but I have a lot of feelings. It’s hard for me to smile but I’m always happy. Some days I think about the things I can’t do, most days I don’t. I ride horses, scuba, sled hockey, and handcycle. I even won a gold medal at the State Equestrian Special Olympics! My life is pretty awesome. When my mom and dad told me that I have HADDS, I wasn’t sure what that meant. I know I have special needs, but I never knew it had a name. My mom told me that I was rare. I knew what that meant and thought it was kind of cool. We flew from Florida to Texas Children’s Hospital to meet Dr. Chao. She helped discover HADDS. She let me see her lab and I got to see the fruit flies they use to experiment. I felt really special. My grandma asked me how I felt about having HADDS. I told her that if it wasn’t for HADDS, I wouldn’t live such a fun life.

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The EBF3-HADDS Foundation was created to promote awareness, research, and support for a rare genetic syndrome discovered in 2016.

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