The story of Darian
When my son was two years old, I noticed that his left eye was not aligned with his right. I initially thought it was an astigmatism. As time went on, he began to complain about discomfort in this eye. Worried, I began to do 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 a white glow instead of a red one was clearly visible. I immediately knew something was wrong.
In a whirlwind of events, Darian was diagnosed with Coats disease and shortly after was admitted into Sick Kids’ 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 for my son was enucleation. With a heavy heart and fear, I went through with this guidance, holding onto Faith that it was the best possible choice for my son.
It took time but 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.
So what is Coats Disease? It is a rare condition in which there is abnormal development of blood vessels behind the retina. These vessels leak fluid in the eye potentially causing the complete or partial detachment of the retina and vision loss. Coat’s Disease most frequently affects infants and children; about two-thirds of patients are diagnosed under the age of 17. Most of the patients (75%) are male. Coats’ is treatable, but not curable.
Due to this eye disease being so rare, pediatricians and optometrists rarely see it so it often goes undiagnosed. The yellow or white reflex I saw in my son’s photo is called Leukocoria, and it is an indicator of Coats’ and more than 20 other rare eye diseases. It is important that comprehensive eye exams include a red reflex test. This may lead to early detection and treatment. It is critical that early detection and treatment are started right away in the beginning stages in order to preserve vision and save the eye. There is no known cause and currently no cure. What is devastating is the psychological impact Coats disease has on some patients. They will live their entire lives always fearing that there is a possibility that the disease will advance after a period of stabilization and they may need to have their eye removed if it moves into final stages.
My son was not invincible to this disease. It progressed aggressively and unfortunately he lost his eye to this terrible rare disease. Our family is determined to use this difficult time in our lives to spread connection and awareness.
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.
I am nervously excited to share a fun story where all kids (regardless of ability) can fall in love with an imaginative, fierce character, who just happens to have one eye. 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.
If you’d like to purchase Adventures with Darian follow this link:
Adventures with Darian: A `Pirate at Sea See: Rames, J.L., Wlodarski, Daniel: 9781778154812: Amazon.com: Books
I am currently an ambassador for Know the Glow. A global non – profit organization that aims to eliminate preventable childhood blindness globally and raise public awareness for glow-related eye diseases. They empower parents to see their child’s vision in a new light by raising awareness about The Glow (medically known as leukocoria) and encouraging them to make sure their young children receive comprehensive eye exams by an eye specialist. If you or someone you know have been effected by the Glow please contact this wonderful non-profit organization and share your story. It is through sharing our stories that we can help spread awareness.
Thank you Rare Disease Day for allowing me to share ours. 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.