To look at Tiny Light Holden with his bright red curls and big smile you wouldn’t suspect the conditions that he endures. Just like any other 3-year-old boy, he loves his trains, trucks and construction vehicles, has a rich imagination and is easily immersed in games, books and puzzles. When playtime is over, he loves his cuddles, especially with his big brothers and their dog. However, Holden’s family knows only too well what he soldiers through.
Holden experienced a traumatic birth that at age 8 weeks resulted in a failure to thrive. By 3 months, it was evident that he was developmentally delayed and by 7 months, he was set up for various therapies. Devastatingly, Holden began having seizures at 14 months which led to a diagnosis of epilepsy and then a further diagnosis of diabetes. As his family came to terms with these treatable but life- changing conditions, it became apparent that Holden was not developing speech that, to this day, remains severely impaired and undiagnosed.
The first few years of Holden’s life have been filled with doctors poking and prodding, therapies with a team of professionals, hospital visits and tests, not to mention daily finger pokes to monitor his blood sugar and medications for his epilepsy. Since being put on an insulin pump just before his third birthday, his development has become more typical and he is able to live a life that resembles that of a boy his age, but he must still constantly navigate a medical system that would intimidate any adult. Holden often administers medical treatment to his stuffed animals in an attempt to normalize his experiences and never fusses or fights his family or the doctors who are working to manage his conditions. Proud mom Corinne says, “He’s the bravest hero I know.”
While Holden’s future is bound to be challenging, his fighting spirit is sure to keep him strong. As he grows up, Corinne hopes that he’ll see his conditions as things that he manages, not as things that manage him. It’s been hard for his family to watch this Tiny Light start his life with so many struggles, but in Corinne’s words, “We’ve mourned his health and ease in life. We’re ready to celebrate the amazing things he has coming his way!”
Story written by Angela Funk
Images Captured by Mercedes Leung Photography