We recently connected with Jo-Anne Longtin and have shared our conversation below.
Jo-Anne, looking forward to hearing all of your stories today. Let’s jump right into how you came up with the idea?
I appreciate your interest in my story and book, “Adventures with Darian”. It all started when my son, Darian, was diagnosed with Coats Disease and underwent enucleation, which was a traumatic experience for our family. During this challenging time, I realized there was a need for books that children with vision impairments could relate to.
I wanted to create a story representing children with vision impairments and celebrating their strength and courage. The book features a character with a vision impairment who is daring and adventurous, just like my son. It aims to give children a sense of representation and empowerment, showing they can do anything they set their minds to.
I hope my book will help bring awareness to Coats Disease, a rare eye disease that can lead to blindness if left untreated. It will also comfort families going through similar experiences and inspire children with vision impairments.
Through her writing and advocacy, Rames is determined to prevent other families from experiencing the same trauma she and her son have gone through. Her book is a powerful testament to how even the most difficult experiences can be turned into something positive and impactful.
If you are interested in purchasing “Adventures with Darian,” you can follow this link: https://mybook.to/adventureswithdarian
Jo-Anne, love having you share your insights with us. Before we ask you more questions, maybe you can take a moment to introduce yourself to our readers who might have missed our earlier conversations?
Hello everyone, my name is Jo-Anne and I am a mother of two beautiful children. I have a degree in psychology and a postgraduate degree in education. I currently work as a substitute teacher and I am passionate about teaching and educating people.
I am also a member of Know the Glow (KTG) team, where I work on promoting awareness campaigns, community outreach, fundraising, and establishing connections with influencers and support groups that align with KTG’s mission.
I am the proud mother of Darian, who has monocular vision due to Coats Disease. Our journey with his disease has been long and challenging, but we have always remained positive and hopeful. I am grateful for the opportunity to share my story and continue to raise awareness about Coats disease and the challenges that children like Darian face. I am also honored to have written “Adventures with Darian” to help provide representation for children like him and promote inclusion and acceptance for those outside the visually impaired community.
What do you think is the goal or mission that drives your creative journey?
As a mother, I strongly believe that my mission is to spread awareness about childhood vision health through my creative journey. My son Darian’s journey with monocular vision and Coats disease has inspired me to use every platform available to educate parents and caregivers about the importance of regular eye exams for children and the signs of eye diseases that can lead to vision loss.
I aim to ensure that no child loses their vision due to a lack of awareness or education. I want to see a world where children with vision impairment are represented and included in children’s literature, media and entertainment.
Through my author’s journey, I am committed to promoting diversity and representation in children’s literature. Every child deserves to see themselves in the characters they read about, and that representation can make a significant difference in empowering children and fostering empathy and understanding.
My creative journey is driven by the need to spread awareness, promote inclusion, and empower children to recognize their potential. I encourage parents and caregivers to prioritize their child’s eye health and to reach out for resources and support if needed. Together, we can ensure that every child has an opportunity to see a bright future ahead.
Rames has recently joined the Know the Glow (KTG) ambassador team to continue her mission of spreading awareness about vision health. This global non-profit organization empowers 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 ensure their young children receive comprehensive eye exams by an eye specialist. If you or someone you know has been affected by the Glow, it is recommended to contact this wonderful non-profit organization and share your story. Sharing stories can help spread awareness and hopefully prevent childhood blindness.
Rames uses her KTG platform as a digital advocate, sharing her journey and resources about eye health through her social media channels. She can be followed on Facebook as “Children with Monocular Vision – Adventures with Darian,” Instagram as “Adventures_with_darian,” Twitter as “with_darian,” and TikTok as “adventures_with_darian.”
We’d love to hear a story of resilience from your journey.
As a mother, it was difficult to watch my son, Darian, struggle with Coats Disease. I still remember the fear and uncertainty that consumed me when we received his diagnosis. However, witnessing his resilience gave me hope and strength to keep moving forward.
Despite the pain and discomfort he experienced, Darian never lost his positive attitude. He remained strong and fought through every obstacle that came his way. When his eye detached, it was devastating, but he pushed through the pain and discomfort, showing remarkable bravery.
As we look back on our journey, I am proud of my son’s resilience and determination. Through his struggle, Darian has taught me that no matter what life throws our way, we have the strength to overcome it. Our experience with Coats Disease was tough, but it brought us closer as a family and made us appreciate every moment we had together even more.
Our story can inspire other families going through a similar experience and encourage them to keep fighting and remain resilient, no matter how tough the road may seem.
Contact Info:
- Instagram: https://www.instagram.com/adventures_with_darian/
- Facebook: https://www.facebook.com/Childrenwithmonocularvision
- Twitter: @with_darian
Image Credits
Raindance Photography and Rene Dawn Photography