Meet the Arce family: Chris, Nicole, and Camden. Camden was born on April 7, 2023. Camden spent the first month of his life in the NICU due to struggles with thermoregulation and feeding. He graduated from the NICU in May, but the journey was only beginning. Due to continuing development struggles, Camden was referred for genetic testing at 3 months old. On his 5th month birthday, the family received the news of his SPTAN1 diagnosis. At first the diagnosis was devastating. Unfortunately, Camden's mutation is one of the most severe. As time has passed since the diagnosis, the Arce family has learned that even with immense grief, their is still opportunity for joy. 

 

Camden's SPTAN1 diagnosis is only part of his story. Anyone who has had the pleasure of meeting him knows him as the spiciest little red head with a famous side-eye. He loves to be included and involved in what's going on in the world around him. 

 

Chris and Nicole set a goal early after Camden's diagnosis to give him a life rich of love and experiences. As a family, they love to go on adventures. The beach and Mammoth are some of their favorite places to visit. Nicole was previously an elementary school teacher. She enjoys finding ways to adapt the world to make it more accessible for Camden. Chris is the adventure planner and is always looking for new places to experience as a family. 

 

If you would like to support the Arce family on their journey, you can visit their Camden Strong Bonfire page.