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Client Story

Rafael

This is my story of my life alongside my husband, Alex, and as a mother to our wonderful son, Rafael, lovingly known as Raf. He’s a mischievous little boy with a laugh that always brightens our day. Raf is two years old now, and he really enjoys playing on slides and chasing after his big sister. He’s got a lot of energy and a kind heart, and he always manages to put a smile on our faces.

As you’ll see, Raf has faced challenges right from the start.

When Raf was born, he weighed only four pounds and was having trouble breathing. He was immediately sent to the Neonatal Intensive Care Unit. Five weeks later, he had barely gained any weight, was having difficulty feeding, and was very floppy when we held him in our arms. After some genetic testing, our beautiful baby boy was diagnosed with Prader-Willi Syndrome (PWS), a rare condition that affects metabolism and muscle tone, resulting in a weak cry and a poor suck reflex, and general difficulty to thrive.

Our world was now filled with worry and fear. It was like a going down a rabbit hole and entering a strange world. We felt lost, alone, and desperate for answers about our little boy’s future.

The next months were very dark for us. Raf could only be fed with a tube inserted through his nose into his stomach, which delivered a blend of formula and breast milk. Because of his developmental delays and low muscle tone, he was generally six to eight months behind his peers in reaching the key milestones.

But finally, the sense of relief we’d been waiting for finally arrived when we got a call saying that a spot opened up for Raf at the MAB-Mackay Rehabilitation Centre – a place known for its expertise, warmth, care, and hope!

Raf was 14 months old when we had our first appointment at the centre. From day one, the team poured their hearts into helping Raf, offering therapies and nurturing his laughter and joy. The dedicated therapists quickly became our guiding light!

“Little did we know that the MAB-Mackay Rehabilitation Centre would become our lifeline—a place where dedicated therapists turned our worries into milestones.”

– Yael, Rafael’s Mother

With their unwavering support, Raf overcame many barriers, one by one. The first goal was to sit up independently, which took lots of work on his core strength. From here, they focused on his balance and muscle tone for crawling, reaching for objects, and eventually walking. Through the therapies, they introduced him to his favourite activity, the slide!

The MAB-Mackay is truly our lifeline. They understand our concerns for Raf’s future, and stand by our sides when we need extra support. Our team even feels like extended family. And every time we walk through the centre doors, I see how safe, happy, and comfortable Raf is.

Our journey doesn’t end here.

Even though we’ve made progress and there have been many moments of joy, we still worry about what’s ahead. Up until now, our focus has mainly been on Raf’s motor development; now, we have to focus on his speech.

You can imagine how hard it is to watch the other children at Raf’s daycare talking to one another. In Raf’s case, there’s a lot of babbling and syllables here and there, but he can only say a few words, like “mama,” “papa,” and “no.” I feel bad for him, because he’s so smart and witty, and I know he desperately wants to talk to us to express himself.

We’re currently working with our speech therapist at the MAB-Mackay on Raf’s ability to coordinate movements of his tongue and lips so he can form words. They’ve introduced us to some basic American Sign Language (ASL), which has been helpful in allowing him to communicate. We’re also exploring the possibility of an electronic communication device.

Looking ahead, we realize that Raf will always need some extra help. But knowing that the MAB-Mackay will be there for us in the years to come reassures us, and gives us hope for his future.

With heartfelt gratitude,

Yael
Rafael’s Proud Mother

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