Earlier this year, we reached out to our friends and vendors about Project VOTUM. We would like to give photos to people who are fighting for a cause or need some photos for the cause that they are supporting. Enter Brittney from Inspire DS here and she introduced us to Stephany. Stephany was Brittney’s past client. Her and her husband, Jason, have a story to share and we are blessed to have met them and share it here too.
Thank you for trusting us as Toronto portrait photographer.
Grayson was born on January 21, 2016. (Interesting fact, that was the day that Brittney nominated Steph to our Project VOTUM this year. Three years later.) He was born healthy. His parents (Steph and Jason) had no concern at all. He was perfect. Steph even mentioned that through the wiggles of his toes, she learned what an unconditional love is.
When Grayson was a few weeks old, he developed pneumonia and didn’t heal as fast as other newborns do. This is when Steph and Jason, her husband, realized something was not right.
They went to Sick Kids hospital for treatment of the pneumonia. But it was taking a long time for Grayson to recover from his illness and the doctors did not know why. During their stay at the hospital, Grayson endured test upon test upon test to try and get to the bottom of a diagnosis. It wasn’t until after Grayson had passed away that they found out what he had: spinal muscular atrophy (SMA).
Steph never left Grayson’s bedside until one morning, she went for a shower. It was on a different floor and as she walked down the stairs, a group of doctors and nurses ran past her to Grayson’s room. She rushed into the room and found out it was code blue. Here is what Steph said about that moment: I walked into the room as the nurse was doing CPR. Jason and I were just standing there in shock, a nurse came up to us and we were forced to make a decision: do we pull his life support ? We weren’t given options, we were told if we chose to keep Grayson in life support this is how his life would be: hooked up to machines, constant respiratory distress, etc. In that moment the world stood still, we made the hardest choice a parent would ever have to make, we chose to have Grayson pass peacefully and pull his life support. We were able to hold him without any machines, and he passed away peacefully in our arms.
Steph and Jason were given some time to hold on to Grayson. And holding to a baby who was just bornt seven weeks earlier but had stopped breathing just minutes before… Steph and Jason were at loss of what actually happened. During our time with Steph, she even mentioned how the doctors back in 2016 were still unsure on diagnosis because SMA was so rare and unheard of.
It was later in that same year, 2016, that Stephany and Jason founded the GraysonsARMY Foundation where they dedicated their lives in continuing Graysons fight and educating our community about this disease. They are committed to being A support for children and families in their community. So no other parent will have to feel the way they felt leaving them with more questions than answers. They want to provide opportunity for education and time to make decisions and to improve quality of life of children living with this disease.
From Stephany:
We are committed to having Grayson’s legacy touch the lives of children and families worldwide, we host a SMA awareness gala every year in honour of our warrior along with SickKids hospital where funds raised go directly to finding a cure. To date we have raised over $100,000.
Our vision has become even bigger, we want to have an impact on the SMA Community as a whole, we want to be able to provide families with time, resources and education about this disease before they are faced with difficult situations and unrealistic time frames. So in 2019, the GraysonsARMY Foundation has been working on creating a proposal for carrier testing to be done on ALL prenatal patients in Ontario. Because every 1 out of 40 people actually carry the gene. The Prenatal Screening of Ontario council has actually passed our proposal and is currently working on the discussions and the revisions to make this happen!
We have so many big ideas planned and would love for continued support and sponsorships from our community, hell us spread awareness and share our story, like our posts and follow our journey @graysons.army.
Stephany, we want to thank you for the bottom of our hearts for sharing your story and your passion… 2020 has been an interesting world. Starting with the pandemic and then the case of George Floyd. Everyone is being asked for their stance and to reevaluate their values. From all of these, we are seeing the importance of knowing the cause you’re believing and for supporting it 100%. We all can stand behind different causes and provide a platform for each other. We hope we get to use our gifts and stand behind SMA for this first project in Project VOTUM. We welcome more causes and nominations from you, please email us at hello{at}helloinspira.com with the person you’re nominating and their cause.
To follow similar cause and get more information about SMA, here are some accounts on Instagram to check out:
@forevastrong
@bravewyattSMA
@lifeforlucy
@kaycensquest
Much love,
We are international and Toronto wedding photographers, please view our work here:
