“What’s Chiara’s favourite toy?” The therapist asked about my one year-old daughter. “It will be a helpful tool in her therapy.”
I had to stop and think. Most parents would be able to quickly and easily identify a special stuffed animal or toy.
“She doesn’t have one,” I answered. Chiara had lots of difficulty to see and interact with any toy at all.
Meet our little girl Chiara. She’s now two-and-a-half years old, and fills each day with happiness and magical smiles. Everyone who meets Chiara falls in love with her and her sweet and caring nature. She lets almost anyone hold her, and she responds with giggles or by calmly resting her head on a shoulder. And although she’s non-verbal, this doesn’t stop her from laughing and even arguing with her dad.
Chiara was only four months old when we noticed she wasn’t making eye contact with us. We’d heard that babies are born with little eyesight, but that by a few months of age they begin to recognize and interact with their mother’s face. She also seemed limp and floppy in her muscles.
We sought opinions from different specialists to explain this worrisome behaviour. This is how we learned that Chiara had a rare gene mutation that would affect her development. So many questions ran through our heads: What would this mean for our little girl’s future? What would caring for her be like? We were given very few answers. The confusion and helplessness sometimes felt paralyzing.
Fortunately, we discovered the MAB-Mackay and found renewed hope.
It was exactly one week after Chiara’s first birthday that we were introduced to this centre that would make such a difference to our daughter. We were initially apprehensive, as we never heard of the MAB-Mackay before and didn’t know what to expect. We quickly found an amazing team of specialists who knew how to unlock Chiara’s potential and had answers to many of our questions. For the first time in many emotionally difficult months, we felt reassured and understood.
They began by working with Chiara’s vision. If she could learn to recognize objects, she could learn to reach out for them and eventually to crawl and walk. Chiara’s vision was normal – the challenge is that her brain was unable to process what she was seeing. Through many sessions of special vision therapy, Chiara soon learned how to focus on and track objects; she’s now able to grab and play with toys.
Building on this skill, her therapists then set to work on her motricity and coordination, as well as her communication. Through each carefully-planned session, Chiara gained the strength in her legs and arms needed to sit up on her own and to hold an object. Since she’s unable to speak, they use pictograms to help her express her preferences or to communicate “yes” and “no.” They’ve also introduced computer games and special apps on tablets to further develop these skills.
The MAB-Mackay has helped in so many other ways too. We participated in group sessions where we met and exchanged with other parents going through similar ordeals. They took Chiara’s measurements and built her an adapted stroller and standing frame. They also custom- made her special glasses with flexible pink frames.
One of the most important things as parents is to know that our daughter is receiving the very best care and support. The MAB-Mackay made all the difference.
Seeing the attention that the team at the MAB-Mackay gives her, how professionals from many different specialties work together on therapies and solutions, gives us immense confidence and peace of mind.
Chiara’s made incredible progress in so many areas of her development, for which we are so proud. Just this Christmas, she made one of her biggest achievements yet. With the strength that she’s developed in her legs, she’s now able to take steps! This is an incredible accomplishment, even if it is with the assistance of her therapist or my husband.
Without you, none of this would have been possible for Chiara.
Even when the pandemic hit, their commitment to Chiara never wavered. They met with us regularly over Zoom during the quarantine period last spring, coaching me with a life-size doll on how to hold Chiara and promote certain movements in her legs. When she outgrew her standing frame, our physiotherapist delivered it to our home and made all the necessary adjustments.
As parents, it’s hard to express how important it is to know that all of our daughter’s needs are being looked after. Your generosity makes all the difference – thank you!
Our story doesn’t end here.
Chiara has come so far, and she continues to work hard to reach her full potential. With all the additional precautions put in place to prevent the spread of the coronavirus, we continue to visit the centre weekly for her therapies. Chiara now is beginning to control her arms and to transfer objects between her hands, as well as to feed herself with a spoon.
Raising a child with severe disabilities is very challenging and lonely. Thanks to support like yours, we’re able to sleep easier at night, knowing that the MAB-Mackay will be there by our side, supporting Chiara with the tools and skills to lead a full and happy childhood.
Lysa, Chiara’s proud mom