Feb 15, 2023

Fostering Inclusion and Building Awareness: An Interview with Children’s Book Author Jo-Anne Longtin Rames

Inclusivity advocate, non-profit ambassador, children’s book author, and mother, Jo-Anne Longtin Rames shares her experience as the parent of a child living with Coats disease.

Coats disease is a rare eye condition characterized by the abnormal development of blood vessels in the retina. These vessels leak fluid in the eye resulting in swelling, and if not stabilized can cause partial or complete detachment of the retina and vision loss. Although Coats disease is treatable, it is not curable. And if not treated early, the disease can cause vision loss.

Please share about your family’s connection to vision loss.

As a parent to a child living with Coats disease, my connection to vision loss is personal as it has directly impacted my family and life.

If you had asked me three years ago my thoughts about eye health, I would have replied with an adequate response with no emotional attachment. However, since the tragic discovery that my son had a rare eye disease at the age of 2, my perspective on eye health and vision loss has changed drastically. Knowing what I know now has motivated me to change the narrative of eye health by becoming an advocate. Sharing our story is the first step in creating awareness.

How has living with monocular vision impacted your son?

My son is a happy child who has monocular vision, this just means he sees the world with one eye. He has developed wonderfully and adapted extremely well to navigating life with limited sight. However, there are noticeable hurdles, such as depth perception, blind spot and hand and eye coordination difficulties.

With depth perception, Darian is limited with differentiating the distance or depth between objects, surfaces, etc. To overcome this challenge, he has developed strategies such as judging the distance between objects in terms of size, location, and height.

Tell us about your family’s experience leading to and following the diagnosis.

This first symptom of Coats disease appeared when he was 2. His left eye started to turn inward. I initially thought it was a lazy eye or astigmatism, a common eye condition that ran in our family. Not long after, Darian began mentioning eye pain. Worried, I conducted some research and decided to take a picture with the flash on. I noticed then that my son’s left eye had a white glow instead of a red one. I immediately knew something was wrong.

Following a visit to an optometrist and leading pediatric hospital in Canada, Darian was diagnosed with Coats disease. I remember feeling so lost; I never heard about this eye disease. The only thought I had was, “what was going to happen to my little boy?”

Following his diagnosis, we waited for his next appointment to learn more about this rare eye disease. It was during this time, Darian started exhibiting more symptoms. I remember feeling so helpless. Approximately three months after diagnosis, Darian became very ill. He was rushed from our local hospital into the leading pediatric hospital Emergency where it was discovered he was in stage 5 Coats Disease. His eye had completely detached, resulting in pain and pressure. I was told that the best outcome was enucleation (surgical removal of the eye, leaving only the lining of the eyelids and eye muscles).

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. Since then, I have become an ambassador with Know the Glow (KTG), a non-profit dedicated to raising awareness of leukocoria (the Glow) and other childhood blinding eye diseases. I help KTG with global campaigns through digital advocacy.

You recently wrote a children’s book, Adventures with Darian: A Pirate at (Sea) See. Tell us about your work and what led you to its inception.

I wrote the book to help my son adjust to his new circumstances. Following his diagnosis, I searched for children’s books that he could relate to but it became clear there was a market gap in children’s books for children living with vision loss. I felt children living with visual impairments deserve to see themselves represented in stories and, most importantly, as main characters who are fearless, compassionate and daring just like my son Darian, and I set out to write this book. 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. The book also helps spread the message of inclusion and acceptance.

What are your hopes for the book?

This is my first book in a series featuring my son Darian, and it is my hope that it promotes awareness of living with a visual impairment and opens conversations about the differences we all share. The main character showcases a prosthetic eye like my son Darian, and this is to advocate for representation and inclusion. It is important that children, like my son, see themselves represented in stories. I believe it is beneficial to all readers because it promotes discussions of diversity and differences, and it showcases that, although an impairment can be challenging, it does not hinder someone’s ability to achieve.

Where can people get the book?

My book is available at most retailers (Walmart, Indigo (Chapters), Amazon). To locate, simply search Adventures with Darian.

It is offered in three formats; hardcover, paperback, and eBook. You may also purchase it online at mybook.to/adventureswithdarian.

What advice would you give other families with children living with vision loss?

My advice to families with children who are experiencing vision loss is to know that they are NOT ALONE.

Two organizations that have been invaluable resources while navigating life with monocular vision and after enucleation are:

Eyehesive has a strong community platform offering blogs, informational videos on eye surgery and prosthetic eye fittings, and virtual events featuring prominent members who have monocular vision.

1icollective is a non-profit aimed at empowering and instilling hope in individuals impacted by vision loss and ocular adversities.

We want to thank Jo-Anne for sharing her and Darian’s story with us, and sharing about her great book. To learn more about Jo-Anne and Darian, follow:

Instagram: @adventures_with_darian
Facebook: @Children with Monocular Vision – Adventures with Darian
Tiktok: @adventures_with_darian
Twitter: @with_darian

Are you impacted by vision loss? Share your story with us.

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