Today, Skylar is a beautiful, resilient little girl who will turn 10 in April. Her journey has been one filled with many challenges, but also incredible strength, love, and moments that remind us just how special she truly is.
When Skylar was two and a half years old, she was diagnosed with Cerebral Palsy after concerns around her development and an MRI. For many years we believed this was the explanation for the challenges she faced. However, after continued questions and further genetic investigations, we finally received new answers in October 2024.
Skylar was diagnosed with GRIN1-related neurodevelopmental disorder, an extremely rare genetic condition affecting only around 200 people worldwide. While this diagnosis brought a new understanding of her condition, it also confirmed what we had always known, that Skylar’s journey is unique.
Skylar lives with significant developmental challenges. She is non-verbal and has an intellectual disability, and she requires full support with most aspects of daily life. Everyday tasks such as eating, dressing, bathing, and personal care all require assistance. Because of ongoing swallowing difficulties, her meals must be carefully prepared and supervised to ensure her safety.
Her days are often filled with therapies, specialist appointments, and supports that help her continue to grow and experience the world in ways that work for her. Skylar attends a special school where she is surrounded by peers who are unique in their own ways, just like she is. In that environment she is able to learn, grow, and be part of a community where differences are understood and celebrated. Watching her thrive in a space where she belongs has been incredibly meaningful for our family.
Skylar also participates in Riding for the Disabled, something she has been doing for the past few years. It has become one of the highlights of her week. Being around the horses brings her so much joy and confidence, and watching her ride fills us with pride. Who knows, maybe one day we’ll be watching her compete in the Paralympics. We can dream for her.
Every small step forward is something we celebrate, just as we always have.
But while Skylar faces many challenges, what truly defines her is her beautiful spirit.
Skylar has the kind of smile that lights up an entire room. Anyone who meets her quickly learns how special she is. She greets the world with open arms, cuddles, and kisses for nearly everyone she meets. Skylar doesn’t see differences, judgement, or hate, she simply loves. Her affection is pure and unconditional, and she shares it freely with everyone around her.
She absolutely loves music and dancing, and being part of everything that is happening around her. Whether it’s family gatherings, daily routines, or simply sitting nearby while life unfolds, Skylar always finds her own way to be involved. Even without words, she has her own way of communicating joy and connection with those around her.
One of the most beautiful parts of Skylar’s life is the bond she shares with her little sister, Mackenzie. Their relationship is incredibly special. Mackenzie naturally guides her, plays beside her, and includes her in everything she can. Watching their love for each other grow has been one of the greatest gifts in our lives.
There have been moments along this journey where I have grieved the life I know Skylar may never have. Having her sister and watching her quickly pass milestones that Skylar has struggled with has been incredibly hard at times. Those moments of grief are real, and I think they will always appear throughout our lives.
But there is also something truly beautiful about watching Skylar learn from her sister. She watches, takes it all in, and in her own way wants to try too. Those moments remind me that Skylar’s journey isn’t about comparing her to anyone else, it’s about celebrating the incredible person she is becoming.
Life with Skylar requires constant care, patience, and advocacy. It is demanding in ways that are difficult to explain, but it has also shaped our family in ways we could never have imagined. Through Skylar, we have learned the meaning of resilience, unconditional love, and celebrating moments that others might overlook.
Skylar’s path may look different to many, but she brings a light into the world that is impossible to ignore. Her strength, her joy, and her ability to love without limits continue to inspire everyone who knows her.
While we don’t know exactly what the future holds, one thing will always remain true, Skylar will be surrounded by a family who loves her deeply and will continue to support, protect, and advocate for her every step of the way.
Her life may not look the way we once imagined, but it is a life filled with love, joy, and purpose. And most importantly, Skylar knows she is deeply loved, and in her world, that is what matters most.
