Declan is a bright, tender-hearted child who radiates joy and brings laughter to everyone around him. His deep capacity for love and creativity shines through in everything he does. Declan was born with an ultra-rare genetic condition called Jansen’s Metaphyseal Chondrodysplasia—a diagnosis so rare that fewer than 20 individuals are currently known to be living with it worldwide.

At birth, Declan presented with breathing difficulties and skeletal abnormalities that left NICU doctors searching for answers. Thanks to a swift referral to a Dallas-based geneticist specializing in skeletal dysplasia, he received a diagnosis at just 3 months old—an extraordinary milestone in his journey.

Jansen’s is a progressive skeletal dysplasia that affects bone development, stature, and metabolic function. It leads to significant challenges including joint pain, gross motor limitations, and excessive calcium excretion that places strain on the kidneys. Despite these complexities, Declan continues to adapt and thrive, learning to navigate a world not designed for those with skeletal differences.

Declan’s days are filled with imagination and discovery. He enjoys designing and building LEGO vehicles, staging rescue missions with his twin sister, and soaring high on his favorite bucket swing. An avid reader, Declan is especially captivated by sharks, saber-toothed cats, and other powerful predators—creatures that reflect his own quiet strength and resilience.