For even if I’m far away, I hold you in my heart.
Cayden was born a beautiful, observant, smiling, laughing little boy and brought us all joy and wonder over the four years. A sweet boy who loved music, his mama's singing, and great snuggles. It had been a journey of Cayden's strength since he was born. Strength of an innocent boy, strength of his parents, strength of the village of love around him. As he began to grow in stride and so quickly right before our eyes, what started as a diagnosis of torticollis, turned into so much more.
Around Cayden’s first birthday his success began to decline and the usual skills, abilities, and milestones slowly were missed. In May of 2021, his parents began their journey to find answers. As any mother would, Crystal, was Cayden's voice, his advocate, his power, persistence and courage. Crystal and Christian fought for their son. Together, many different doctors, many appointments, many calls and follow-ups, to be given news that no one could begin to comprehend. On November 4, 2021, at 18 months, Cayden was diagnosed with Sandhoff Disease-an ultra rare lysosomal storage disorder. This is a terminal condition that progressively destroys nerve cells in the brain and spinal cord. Unfortunately, there is no cure, but there is treatment on the horizon. Now, it’s because of Cayden that local hospitals have now changed the way they do their genetic testing. So no other child or family has to wait for such time sensitive answers.
Cayden is so incredibly loved and a light in so many lives. He loved to be outside with a nice breeze hitting his face, at the beach or pool, and listening to Ed Sheeran. He was a boy who was non verbal. Truth is love needs no words. You were able to love Cayden with just a single interaction. Who knew that a 4 year old boy could touch the lives of not just our community, but all over the world. The impact he’s had on the world is so grand.
Four years may sound short, but he truly lived a lifetime. In Cayden’s four years here on earth and beyond, he’s been the greatest teacher. Although, we still wish this isn’t how his story was written we’re reminded that this isn’t our forever home. We’re trusting Gods plan for our life. Choosing to believe that even through the pain He is still good. Choosing to believe that one day, we will look back and see all of this pain has a purpose.
Our hope is through Cayden’s journey he is able touch your heart, change lives, and leave a big legacy.
Until we are together again, we love you forever Cayden!