Sandra and Andrej are living their #BestLife, one step at a time
Like many seasoned runners, Sandra’s motivation to move comes from a place much deeper than a physical fitness goal. When the steps are heavy, the breaths are short and the finish line is far, Sandra draws inspiration from the person in her life who has never quit or let adversity stand in his way — her incredible son Andrej.
Andrej and his twin brother came into the world at just 24 weeks old, weighing just 720 grams. As an extremely preterm twin (a baby born at less than 28 gestation), only Andrej survived. He fought for his life for almost four months until finally, against all odds, Andrej was ready to go home.
“The medication Andrej needed to keep him alive in the start actually made him deaf,” Sandra said. “Once he showed us how strong he really was, we wanted to get him cochlear implants but our local hospital in Montreal just didn’t have enough research to support the surgery. When I finally reached out to CHEO, all I began to hear was ‘yes!’ and I just couldn’t believe it since we had been told it was impossible.”
Sandra will never forget the moment when her surgeon at CHEO came into the waiting room and said the magic words: “All 24 channels in Andrej’s implant are working.” Andrej would soon hear his mom’s voice for the very first time!
As a child with complex care needs, Andrej’s journey with CHEO was only just beginning. To make access easier, Sandra moved provinces to be closer to CHEO.
“I used to have this big black binder where I kept Andrej’s different health records because he was being seen by so many different doctors, in so many different clinics. At night, before an appointment, I would sit down with my binder while I had dinner because I had to study and make sure I was able to help them understand what was going on and what Andrej needed. In a lot of ways I had to be like his doctor because none of the clinics spoke to each other and the system was really disjointed.”
Just some of the paperwork Sandra would add to Andrej’s black binder
For the next seven years Andrej would be seen regularly in various clinics at CHEO. Sandra said the most important part of this journey has been the continuity of care.
“For the first time it felt like I could just sit back and be his mom instead of having to be his doctor too. All the clinics spoke to each other at CHEO so things were so much more organized. There is a certain understanding between a parent who is knowledgeable about a child’s condition with a team of doctors and nurses. At CHEO, I have always been heard, valued and respected as part of my son’s care team.”
From the cochlear implant surgery that helped him hear his mom’s loving voice, the eye surgery that allowed him to see his mom’s smiling face, and CHEO’s autism services that helped him excel in mainstream school, Andrej is truly living his #BestLife.
This fall, 14-year-old Andrej will race off to the next big milestone in his life: high school. It’s a necessary next step for him to achieve his ultimate goal to be the first autistic and deaf (with cochlear implants) astrophysicist! Sandra knows he’ll meet the challenge with the same bravery and enthusiasm he has been recognized for through a number of school awards.
Sandra will be marking Andrej’s achievement with a race of her own, raising funds for mental health services at CHEO in the RBC Race for the Kids — an event she has supported for the past six years.
Families with complex care needs, like Andrej and Sandra, are just one of many reasons CHEO is always working to improve access to care. The 1door4care project will do just that, bringing together seven different locations under one roof specifically designed as a life-changing, integrated care centre for kids and teens with special needs, medical complexity or mental health challenges.
“As a complex care mom coming to CHEO, I feel like a new door is open to us.”
