Darian
"It became apparent that children with vision impairments deserve to see themselves represented in stories, but most importantly as main characters who are fearless, compassionate and daring just like my son Darian."
If you had asked me three years ago my thoughts about eye health and rare diseases, I would have mumbled an adequate response with no emotional attachment. It is amazing how a life altering event can change this response in an instant. Knowing what I know now has motivated me to change the perception of vision health by becoming a digital advocate. My investment in advocacy is personal as eye health has directly impacted my family and my life.
When my son was two years old, his left eye started to turn inward. I initially thought it was just astigmatism, a common eye condition that ran in our family. I chalked it up to being hereditary. As time went on, he began to complain about pain in this eye. Worried, I conducted some research. Following some information gathered, I decided to take a picture with the flash on. After capturing some photos, I quickly became sick to my stomach. In my son’s left eye was a white glow instead of a red one. I immediately knew something was wrong.
In a whirlwind of events, Darian was diagnosed with Coats disease. I remember feeling confused; I have never heard of this eye disease before? What did this mean? What was going to happen to my little boy? My mind flooded with questions as feelings of isolation overwhelmed me. All our family could do now was wait for his next appointment to learn more about this rare eye disease he was just diagnosed with. It was during this time, Darian started exhibiting more symptoms, my anxiety was mounting and I felt so helpless. Right before his third birthday and one month before his appointment Darian became really sick. He was rushed from our local hospital to Emergency at the city's leading pediatric hospital where it was discovered he was in stage 5 Coats’ Disease. His eye had completely detached resulting in pain, and pressure that caused severe vomiting. Under the direction of the medical team, I was told that the best outcome was enucleation. This day still lives inside of me and it is what drives me forward to bring awareness about Coats Disease and Leukocoria (the glow) to promote early detection.
To help my son adjust to his new circumstances, I searched for some children's books that he could relate too. After conducting research, I was painfully aware of a market gap in children’s books about or for children with vision impairment etc. It became apparent that children with vision impairment deserve to see themselves represented in stories, but most importantly as main characters who are fearless, compassionate and daring just like my son Darian. Determined, I set out to write one. My book “Adventures with Darian” “A Pirate at (Sea) See” provides important representation for children with monocular vision, where they can see themselves as the hero in the story and feel empowered, while also spreading the message of inclusion and acceptance to others outside the visually impaired community. This is my first book in a series, as I plan to feature Darian in all my stories to highlight eye health and promote inclusion into children’s literature.
My son is a happy little boy who has monocular vision. He has developed wonderfully and adapted extremely well to life with one eye. He really is a hero in my eyes. As parents, we worked hard to help Darian adjust to his new circumstances and learn how important it was to wear his protective eye glasses (polycarbonate lens guard his seeing eye). As Darian navigates the world with a prosthetic eye (an eye made of plastic acrylic) it is our hope to help create a world that he can grow into with confidence and acceptance. This means connecting, building and establishing strong connections within the monocular community. We strive together as a family to unite with others in order to avoid feelings of isolation. We know and understand that there is power in numbers, and that any darkness or challenges faced can be overcome within a supportive community. My digital advocacy is to align with this mission and establish “Adventures with Darian” as a resource of education, inclusion and connection.
I like to highlight the organization below as a resource for vision health. Know the Glow. A global non - profit leader in raising awareness of leukocoria (the glow) and the childhood blinding diseases it can indicate. They work globally to eliminate preventable childhood blindness through early detection and treatment if these conditions. Know the Glow helps parents see child’s vision in a new light so that in the future no child goes blind from preventable eye diseases.
Final Thoughts
My son was not invincible to this rare eye disease. It progressed aggressively and unfortunately; he lost his eye. While our journey on the vision impairment path has had many challenges and sad times, it has also inspired us through strength, determination, hopefulness, and ability. We want to share this with other families who may be facing challenges with rare eye diseases and also the wider community, to know that through any darkness we can see a bright and prosperous future. Most importantly, you are not alone.
