About

Hello and welcome!

My name is Sam and my rock of a husband is Kyle. We created two beautiful boys, Kaidyn (almost 5) and Nolan (10 weeks old). This is our story that surrounds our little man, Nolan.

To give you some history, we need to rewind over 3 years ago when my husband and I started our fertility journey. Kaidyn would often make comments asking where his sibling was and that he had no one to play with. You know, the innocent comments that instantly send tears to your eyes and that dreadful lump in your throat. We had one loss during this time but through it all we still desperately wanted a second baby, through the pain we felt we needed one to fill a void we just couldn’t explain. During this time, I thought the hopelessness, the yearn for a child and the pain that swarmed my existence was the most excruciating. I was sadly and utterly mistaken, as what was next to follow triumphs it all.

After our third attempt of an IUI at the fertility clinic, we finally heard the most beautiful words, “Congratulations Sam, you’re pregnant”! Finally, we were blessed with this little miracle. The anxiety and worry never truly subsided through the pregnancy as we had a little scare at 7 weeks but to our surprise the little babe had a strong heartbeat and trekked through the entire pregnancy, like a champ. Nolan was born at 39 weeks, probably the most peaceful, zen like baby after birth we have ever seen. He was perfect in every way and we all could not have been prouder, after all we were waiting for this moment for years, but what truly felt like decades.

Fast forward to Nolan at 4 weeks old, I just couldn’t shake this awful feeling that something wasn’t right. There was no true sign that lead me to this conclusion, I guess just mother’s intuition. It was time for our tummy time and face to face interaction when I noticed Nolan wasn’t quite following toys or even myself for that matter. I knew this wasn’t out of the norm as he was still quite young, but I had to follow my gut. I researched and saw to take pictures with a flash to determine a normal red eye reflex, however in every shot Nolan’s right eye was white and cloudy within the pupil. Red flag alarm started ringing, ‘this can’t be happening’ I thought. My husband, being the calm, logically man that he is suggested to breathe and make the necessary appointments, which I did. Both the Midwife and Optometrist confirmed his right eye needed attention, but the left eye seemed to have the red reflex. ‘At least he has the one eye we can work with’ we said amongst ourselves and was hoping it was just a cataract that could be fixed easily.

So, there we were sitting at Sick Kids eye clinic, waiting to see the doctor with racing minds. During the initial exam the doctor was apprehensive to say too much, the silence could have been sliced with a knife at that point. Ultrasounds and hours later, we were slapped with the excruciating news from the oncologist, “your son is visually impaired in both eyes”. His carefree, unempathetic demeaner was less than desirable and the limited answers we received saturated the room with hopelessness. How is this happening to our baby? Why is this happening? We would give him all we had in that very moment, we begged and pleaded for this to be a nightmare we could wake up from. As the days meshed into the next and our eyes opened, we realized, this nightmare was our reality. It was more apparent than ever that our son was blind. The emotions that were scrambled in our soul was enough to send anyone to their knees and that’s exactly what they did. There were no words that would accurately describe the pain we felt as parents, it was almost as if we had failed him in some shape or form. Although we knew there was no way we could have known or impede on what was meant to be, it didn’t stop us from looking at our son with such sadness as we softly and repeatedly apologized. All joy in this very moment was ripped away from us when we were told he may see light and shapes, but vision restoration is very rare as success could not be measured in these circumstances. We felt gutted like fish.

The following week we headed back to Sick Kids to discuss the cause of Nolan’s blindness and a treatment plan, if anything at all. We spoke with a genetics counsellor who informed us both his retinas were detached and three possible conditions were the cause: Bilateral PRFV, and two genetic conditions, FEVR and Norrie Disease (the worst among the three). We went through with genetic testing not knowing what to think, let alone what to ask. Our world was turned upside down, as were spoke to various professionals my mind was an empty void that only had a flashing sign stating, “he’s blind”. We waited all day to speak to the retina specialist who gave us a pitiful amount of his time as he was coming from the Operating Room and heading straight back. He stated that based on Nolan’s test results, it was looking very severe and the latest test he took suggested that he was not responding to light. Our baby went from reacting to flashes and sunlight to being completely blacked out. I wanted to scream and tear down the room, but I gently sobbed instead. In addition, this doctor stated that he believes Nolan has Norrie Disease which is very rare to get any form of vision, but light perception may be the best outcome. How could it be that he has the worst of all three? I felt myself slip away as each visit, each test, turned out to be the worst of all scenarios. We were given a 50/50 chance following surgery, at the time we had no idea what that meant but knew he deserved a chance.

We drove home in silence as we let our thoughts and fears consume us. We told ourselves we wouldn’t research the disease as we weren’t certain but we both caved in the early morning. This very rare disease that affects roughly 0.001% of the population is horrendous as the mutated cells hinders proper development of blood vessels. To our horrific surprise, this genetic disease isn’t just isolated to the eyes, it is also linked to hearing loss, cognitive/behavioural disabilities, intellectual delays among other things. As if it wasn’t enough for Nolan to overcome the challenges of blindness but there is an array of other worries that go along with it. Nolan will, along with other people with this disease, undergo multiple surgeries as he grows due to the leaky blood vessels that will ultimately pull at the retinas causing frequent detachments.

As I look down into my son’s eyes it becomes more apparent that he is blind, his blank stares and jolty eyes gives this away. My heart could stop beating in this very moment but then he successfully reaches out for my finger and grips with such intent and power. This act of comfort, of love, reminds me that he needs us and it’s within this I realize we need him just the same. When we first found out the news we were so focused on the activities and things he could not do or participate in, but we now understand that it was our fear of the unknown and our lack of understanding and education that caused a sense of discomfort. It’s within these toxic thoughts and mindset that we knew we had to create a sense of awareness and broaden people’s perspectives, as we couldn’t possibly be the only ones to think this way. During a Ted Talk episode, we were enlightened on all the accomplishments, interests and activities of a man who was completely blind. He mentioned that blindness is the third most feared condition, following cancer. I must admit, we were guilty of this thought as well. This is the very reason we are challenging ourselves to broaden our perspective on blindness and not view it as a limitation in life, we hope for others to do the same. In life we all want inclusion, acceptance and a sense of purpose, blindness is no exception. Our aim is to raise awareness as well as encourage and participate in our community to limit service gaps that would otherwise make it impossible for Nolan and others to engage in regular activities that most people do without a second thought.

Thank you for following his journey and supporting our family along the way. We are so humbled by all the generosity and eagerness to lend a hand.

The Briggs Family