I’ll never forget that moment. About halfway through my pregnancy with Scarlett, an ultrasound revealed something wasn’t right. Our baby had a serious heart defect.
After more testing and monitoring, the doctors explained that Scarlett would need surgery within days of being born. We understood the risks, but there was no doubt in our minds that our baby would have every chance at survival. It was a terrifying time with many sleepless nights, and I’m happy to say that Scarlett made it through. The surgery was a success, and for a little while, we could breathe again.
During her recovery at the children’s hospital, the staff and I started to notice that Scarlett was struggling with her breathing during bottle time. So to be safe, the hospital felt we should do some genetic testing, especially since she wasn’t hitting the ‘normal’ baby milestones and due to abnormal brain imaging.
That’s how we found out she has an extremely rare genetic disorder called Poirier-Bienvenu Syndrome — so rare, in fact, that fewer than 100 people in the world are known to have it. There wasn’t much information out there, but the literature said that some children with this condition may never walk or talk.
That’s when our world changed.
We knew this couldn’t be corrected with surgery, that it was going to be a life-long condition with no treatment or cure. Just a million unknowns.
We didn’t know how Scarlett would grow and develop, or what her future would look like.
Would she ever be independent?
Would she be able to live a happy life?
All we wanted was for our little girl to have a chance at joy, at possibility.
In the middle of that fear, we were referred to the MAB-Mackay.
It was soon after Scarlett turned one-year-old that we had our first appointment. She was finally medically stable. But developmentally, she was still at the same level as a baby.
What struck me when we met her therapists for the first time was their warmth and humanity. After the whirlwind that our lives had become, it was refreshing that they took the time to listen and answer all our questions. We felt understood, never rushed, and we could see that they truly wanted to help Scarlett be all that she could be.
As parents, it felt like pure hope. Thank you for helping to make this possible.
Over the past four years, the MAB-Mackay became our second home. Scarlett had therapy sessions with many different specialists, who worked hard with her to unlock her potential.
One of Scarlett’s main challenges was sitting up on her own. Most babies hit this milestone by the time they’re between six and nine months. It was hard watching her struggle, as she just didn’t have the strength to support herself.
Elise was our amazing physiotherapist who wouldn’t give up. She helped Scarlett learn to sit up independently, to reach for objects and crawl. She helped us get braces for her legs so she could maintain stability in standing, keeping her balance, and taking her first steps. You can’t imagine the look of pride on Scarlett’s face when she actually walked for the first time – and then eventually ran into our arms to give us a hug. Believe it or not, they even showed her how to ride a bike – something we truly never imagined possible!
At the same time, our incredible speech therapist Dana was working on her ability to talk and to understand others. For the longest time, she wasn’t speaking at all, just smiling and waving. It was hard to know what she wanted, and we worried how she could go through life not being able to express herself verbally. With Dana’s support, Scarlett found her voice and can now speak in full sentences. Hearing her say “I love you” is priceless and something we don’t take for granted.
Looking at Scarlett today, it’s incredible to see how far she’s come.
While Scarlett has come so far, her journey is far from over. Last month, Scarlett started kindergarten at Mackay Centre School. Before school started, we said goodbye to Elise, Dana and the other therapists who’ve been our lifeline for the past four years. It was a bittersweet moment filled with tears of hope and gratitude, as we celebrated all that Scarlett achieved.
Scarlett has a brand-new team of healthcare specialists now that she’s in their adapted school, and they already set up a plan for her. They’ll focus on her ability to put on her clothes by herself, brushing her teeth, and potty training in occupational therapy. Her new speech pathologist will work on expanding her vocabulary rather than gestures, as well as on pronunciation and speaking clearly so she can be understood. They’ll also work on strategies for better balance when walking and managing the braces on her feet.
Raising a child with special needs is very difficult. There were many moments when we felt scared and nervous about our daughter’s future. The MAB-Mackay gave us positivity and hope. It’s an incredible gift to know that they’ll continue to be by our side, supporting Scarlett with the tools and skills she needs to lead a full and happy childhood.
Your support will ensure that the MAB-Mackay can keep providing hope, opportunity and the best care to Scarlett and so many children who need it most.
With our deepest thanks,
Veronica, proud mom of Scarlett
P.S. There’s nothing more heartbreaking for a parent than seeing their child struggle. This is a reality of life every day for Scarlett and for us. The MAB-Mackay is key to giving our daughter the future she deserves.
Thank you for transforming Scarlett’s life, and the lives of so many others at the MAB-Mackay every day!