top of page

Darian Rames, 4, and Mom Jo-Anne Longtin-Rames

Updated: Nov 16, 2022

I am so happy to finally connect and share Darian's Story.

This is Darian at stage 5 Coats disease before eye removal
This is Darian at stage 5 Coats disease before eye removal

Social media handles:

My Kickstarter campaign is www.adventureswithdarian.com

IG: @adventures_with_Darian

https://www.facebook.com/Childrenwithmonocularvision


Where are you from?

Ontario, Canada


Where do you live now?

I'm living in Orillia, Ontario



Tell us a little about yourself:

I'm a mother to two beautiful kids. I am a teacher and nomad, traveling and exploring are my top priorities as a parent and individual. Since Darian's diagnosis, I have been on a mission to spread awareness of eye health. My primary objective is to never let a family go through what we went through. Early detection is key in preventing childhood blindness and vision impairment. I have teamed up with two wonderful organizations, "Know the Glow'' and Jack McGovern Coats' Disease Foundation (JMCDF). As part of my book launch on Kickstarter, I am donating books to both organizations. It is important for children who have a prosthetic eye or vision impairment to see themselves represented in books. Diversity and representation in children's literature matter as it helps promote inclusion for ALL children.


What’s your eye story?

I would like to introduce myself and ask for your assistance in spreading the word of a remarkable little boy, who beat all the odds after being confronted with a harrowing experience while just a young toddler. My son, Darian, was just two years old when he was diagnosed with a rare eye condition called Coats disease. So much is still unknown about the causes of Coats disease, research is still trying to ascertain this. But what is known is that the chances of losing vision in the affected eye are one in four, and this is what happened to Darian.


Not long after his third birthday, surgeons had no choice but to remove his left eye. Darian has shown so much courage through this whole ordeal and adapted to monocular vision extremely well. It hasn’t been the easiest path to walk, but we as a family see the brightness in the future ahead and are aware it could have been worse. After conducting research, I was painfully aware of a market gap in children’s books about or for children with vision impairment.


I set out on a mission and decided to write a children’s story for my son and other children who were undergoing their own difficult journey with eye health. My book, “A Pirate at (Sea) See” was inspired by my daring, fearless, compassionate, and resilient son. From this tragedy came a deep passion to create awareness of vision impairment and promote inclusion through stories. So how can you help me? In many ways and any way you can. As a new author, I am looking for publicity to get people aware of my book and cause. I am not in this for the money and may well make no profit, that’s not what is driving me.


I am launching the book on a website called Kickstarter on Sept 29th, 2022. This is a place where new authors pitch their books and ask for pre-orders on creative ideas/books. If you like to follow along please visit www.adventureswithdarian.com and click the green button that says "Notify me of Launch" which will prompt you to make an account. The more followers I get the more visibility I get when my project goes live on Sept 29th. I am available for interviews and any other promotional ideas.


This is Darian after surgery at the hospital
This is Darian after surgery at the hospital

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 sick children and also the wider community, to know that through any darkness we can see a bright and prosperous future.











What has been the most challenging mentally?

If I had to be honest, guilty. I consented to Darian's eye being removed. The doctors explained to me that his stage 5 Coats had progressed to permanent status and even if the intervention was used, it would be unlikely that it would stop the pain or damage done. He had retinal detachment, significant fluid leakage, and severe pain which all indicated that the best solution was removal.


However, I can't get over my nagging internal voice, saying that I should have done more. That I should have gotten second opinions. I feel that I took away my son's choice in removing something that is a part of him. I have flashbacks after surgery and his voice asking "What happened to my eye". I still get overwhelmed with emotions just thinking about it and wish I could just wipe away the whole experience from my brain. Perhaps this is why I am pushing myself to spread awareness of eye health. I find myself asking, would early detection have saved Darian's eye? Why didn't I recognize the signs of the disease earlier? Knowing what I know now, I really am on a mission to prevent this from happening to another child or family.


What has been the most challenging physically?

I think my concern as a parent for Darian is ensuring he wears protective eye gear. Young children often get into accidents, and Darian who navigates life with monocular vision is more likely to bump into things because of his blind spot. Darian wearing protective eye gear protects his seeing eye which is very important to me. However, I do stress the importance that Darian can and will do anything anyone else can. I try to make sure that I am not over-protective or helicopter-ing him while he is out playing. I believe taking risks is important for children’s confidence and preventing Darian from doing these things would hinder his development. Darian has adapted fairly well to monocular vision. Adjustment to his blind spot seems to be resolved with 180-degree head movement from side to side. He does this naturally now, however, when excited he still forgets and will run into something that could have been avoided. He also has gained fairly good hand and-eye coordination although his ability to catch is still tricky as he gains better depth perception.

Where are you now in your recovery?

I am still accepting that Darian lost his eye to a rare eye disease. As part of my healing process, I am trying to bring awareness to parents and all people about the importance of getting regular eye exams as a method of early detection and vision impairment.

Family picture at the Great Barrier Reef
Family picture at the Great Barrier Reef


What advice would you give to someone going through their eye impairment journey?

As a parent, seeing my son go through surgery and recovery was quite traumatic for me. I went through a lot of emotions, sadness, anger, self-blame, and deep remorse. I talked to a therapist to cope for several weeks after Darian's surgery which I feel was a vital aspect of my healing process. Although I still struggle, I now know that self-blame is a really destructive emotion that will only hinder my role as a parent.


Lastly, I would advise other parents to find a community of people that understand them and empathize with their emotions. A community that provides support, encouragement, and hope. Knowing you are not alone makes all the difference in the world. This is what I am doing, not only for myself but for my son. I want him to know that he is never alone. Creating a community is important to me, and I hope that Darian can grow up a part of this community and a future role model for others.


Who is your eye surgeon and ocularist?

Dr. Ashwin Mallipatna (SickKids) Matthew A Milne


How did you find EYEHESIVE?

Instagram


Are you attending the EYE CONNECT Virtual Conference? eyeconnect YES!!!!


I debated about including a photo of Darian with his eye patch while in recovery and what he looked like immediately afterward, and decided not to share because it's just too painful for me. When he is older if he wants to share them he can.

Here is my book. If you like to give a review please do. This is my first book in the series and I wanted it to be a light introduction to Darian and his vision impairment. My next book is much more emotional, where he discovers a dragon who has lost his eye and he helps him in adapting to life with one eye (it's actually the first story I wrote but my editor advised me to publish A pirate at Sea first as it has more appeal to a wider audience. I am set to publish Darian and the Dragon next year which is the one I am most proud of).


Recent Posts

See All

Comments


bottom of page