I’ll never forget the moment I saw my daughter Sofia experience true comfort for the first time in her life.
For months, I watched my daughter struggle — with swallowing, with coordinated movement, with so many things other children her age do without thinking. And on top of that, the doctors’ appointments and genetic tests. The weight of it all, as a mother, was immense. There were days I wondered if Sofia would ever know what it felt like to have her body at ease.
But when the occupational therapist and technician from the MAB-Mackay positioned Sofia in that carefully adapted wheelchair stroller for the first time, something shifted. I watched her entire body relax in a way I had never seen before. Her tension melted away and I heard her express her joy in sounds only she could make.
My heart lifted. I felt relief wash over me, and with it, hope. Real hope, and profound gratitude.
In that moment, I knew: the MAB-Mackay had given Sofia something precious. They had listened to her needs, understood her body, and created a stroller that allowed her to simply be.
You helped make this possible.
Sofia is six years old. Her favourite things are the pool, her bike, dancing in her wheelchair to music, and when her older sister makes her laugh.
Sofia has a rare genetic condition called TANGO2, which affects her energy and development, and also damages her optic nerve. When the first signs appeared (her inability to eat, severe nutritional loss, muscle weakness), the world was shutting down due to the pandemic. Medical support became nearly impossible to find. As parents, we found ourselves mostly alone, learning in real time how to help our daughter as she grew weaker and more fragile with each passing day.
Hours spent searching online for a stroller that could be adapted to support Sofia’s positioning led me to the wheelchair department at the MAB-Mackay. After this, they introduced us to an amazing team of therapists whose patience, knowledge, and genuine care transformed not just Sofia’s life, but our entire family’s.
I can’t say enough good things about all the MAB-Mackay’s specialists, from so many areas of expertise, each one who played a role in supporting Sofia and her development these past four years. With their help, she’s improved her feeding abilities and no longer relies only on tube feeding for her nutrition and energy.
This was a major breakthrough that has changed our world. She’s developed her muscle tone and is now able to support her own weight. You can imagine how proud we were when Sofia took her very first steps (with the gait trainer they provided us) in the hallways of MAB-Mackay.
They custom-designed a wheelchair for her – pink with flowers on the wheels! An occupational therapist prepared a report to help us adapt our minivan so Sofia can have easy access. And they’re always available for repairs or adjustments so that there are never any obstacles to her access and participation.
As Sofia’s vision is also a challenge, they are constantly monitoring it to figure out what she’s able to see and how to stimulate her vision. They’ve designed glasses (in pink frames) with special lenses to help with her astigmatism and sensitivity to light. They’ve also introduced her to a white cane, which she’s learning to sweep on the ground in front of her when walking with her gait trainer.
While Sofia shows some verbal understanding, she’s unable to form her own words. We’ve come to understand her through her looks and the sounds she makes. But the MAB-Mackay found other ways for her to express herself using pictograms, or by hitting a button with her hand to say “yes” or “no.”
What a remarkable feeling for us, to understand her. It must have been great for her too, to know that she could express her thoughts and be understood.
Thank you for giving our daughter this incredible gift!
Because of the generous support from people like you, Sofia now truly has a future filled with hope. A future where she can accomplish things we never imagined for her.
While Sofia has come so far, her journey is far from over.
Last year, she started attending the MAB-Mackay’s special school. Everything at this school was designed with children like Sofia in mind. She takes the bus to school every day, just like other kids do (it’s adapted for her wheelchair). She’s surrounded by other children with similar challenges, and she has friends of her own. She can participate in all types of activities and field trips. They even have an adapted pool for her phys-ed classes, where she can float and be free.
The school also has a full team of rehabilitation therapists from the MAB-Mackay, who come get Sofia from her classroom to work on her skills. She benefits from a full range of care: physiotherapy, occupational therapy, music therapy, vision therapy, and more. They’ve even evaluated her for her very first adapted bike! This year, they’re continuing to help her develop abilities, finding new creative ways to unlock her potential.
It’s an extraordinary gift to know that the MAB-Mackay is by our side, supporting Sofia with the tools and skills she needs to have the full and happy childhood she deserves. And this gives me a feeling of hope and security that’s impossible to put into words.
You make this care possible for Sofia.
From the bottom of my heart, thank you for being there for our daughter!
Geneviève, Sofia’s proud mom
P.S. Being a parent is hard. Being a parent of a child with disabilities is so much harder. Your support today will help ensure that children like Sofia can receive the life-changing care they need at the MAB-Mackay. As a parent, there is nothing more important. Thank you for your kindness and generosity!