Owen's Story

Photos courtesy of Sourpuss Smiles Photography

This is Tiny Light Owen. He is a one-year-old boy with a gentle heart and huge love for everyone. He loves making people laugh, especially his sister and parents! 

Owen was born prematurely. His parents sensed that something wasn’t right. Test after test, there were no answers. Finally, at a year old, Owen was diagnosed with Kleefstra Syndrome, a chromosomal abnormality. His parents were devastated. Owen is only one of 
124 known cases in the world with this diagnosis. Because of its rarity it is new to most doctors. There are no support groups. There is no one to talk to. For these reasons, his parents feel very alone. Owen has a micro-deletion of the long arm of one of his ninth chromosomes. He presents with global developmental delays. He has hearing and vision difficulties, risk of seizures, a heart murmur, feeding and swallowing issues, and frequent respiratory infections caused by aspiration reflux/GERD. 

Owen’s mother encourages all parents of children with disabilities to read Welcome To Holland by Emily Perl Kingsley. It is an essay written about the excitement of an anticipated trip to Italy that instead lands in Holland. This powerful metaphor changed Owen’s parents lives. They have come to terms with the fact that Owen will most likely require assistance for the rest of his life. With intensive therapy there is a chance that he will walk by the time he enters 
school. While Owen’s parents worry about who will care for Owen when they are gone, they are reassured daily seeing the love his sister Mia has for him. They are confident that she will continue to advocate for him. 
Owen loves circle time at daycare, cuddling on the couch, and Disney movies. His best friend is Tika, his 24 lb tabby cat. His parents hope for Owen is that “he continues to be happy and loving and that nothing takes that away for him.” Like all parents, they wish a fulfilling life for their sweet son.