It’s hard to say when exactly it was that we fell in love with the MAB-Mackay Rehabilitation Center. Looking back, it was probably some time after our son Matteo was recovering from his successful stem cell transplant, when he was taken under the wing of the most remarkable staff.
Our story begins when Matteo was only 7 months old, and was diagnosed with MPS type 1 (or Hurler Syndrome) – an extremely rare genetic disorder that most doctors had never even heard of, or had only read about in textbooks. We’ll never forget when the doctors told us that the odds were better for us winning the lottery than having a child with this disease. With this heart-wrenching news, we searched tirelessly for solutions to help Matteo through the ordeals that would come next.
Following the stem cell transplant at the hospital a few months later, Matteo needed to begin intensive occupational, physical and language therapy to help him catch up with major developmental milestones he had missed. Unfortunately, we were faced with yet another huge challenge – Matteo was not allowed to step foot in public places as his immune system was weak. His blood levels were much too low to protect him from even the most common everyday germs, and we couldn’t chance risking him becoming ill.
We contacted our local center in the hopes they could provide home services for Matteo. After explaining our story, we were told that there was nothing they could do to help our little boy. Matteo’s situation and diagnosis was far too complicated for them. We remember it like yesterday; we felt disheartened and outraged at their unsympathetic response.
We were so discouraged and had no idea how to get Matteo the vital help he needed. The alternative might have been hiring a private therapist, but this option was next to impossible for us. We were already struggling as a single-income family raising a special-needs toddler who required so much attention with medical appointments and endless follow-ups.
That’s when I called the MAB-Mackay, literally crying because we had nowhere else to turn. We were not strangers to this remarkable institution, as Matteo was born with severe hearing loss and received audiology and language services from them as a toddler. Overwhelmed with despair, we poured our hearts out to the program manager, who took the time to listen and comfort us.
He’s come so far with their help – one of his proudest moments was representing the MAB-Mackay in a running competition for special needs children. As parents, this was truly an amazing moment to watch as our son accomplished something that would have been so far out of his reach.
Just one week later, the program manager called back with probably the happiest news we’d heard in a quite a while! The MAB-Mackay came to our rescue and offered to make exceptional arrangements to provide Matteo the therapy he so desperately needed, in our own home, until his immune system was strong enough for him to venture out to the Centre.
It is due to the unwavering hard work of the MAB-Mackay’s caring staff that Matteo finally learned to crawl, and then stand, and eventually to walk on his own. We’ll never forget how we were brought to tears when Matteo spoke his very first words in one of the therapy sessions.
Thanks to your generosity, the MAB-Mackay is here for us and nearly 4,000 other real people in the community each and every year. They provide the assistance to so many infants and children with motor disabilities, and to people of all ages who are blind or visually impaired, or are deaf or hard of hearing – as well as their families.
We are forever grateful to the wonderful team at the MAB-Mackay, because without them, our little boy would not be who he is today. Matteo is now in Grade 1 in a mainstream school, and doing better than we could have hoped for.
There are still so many challenges ahead for Matteo as he fights this progressive disease and its effects. But with the MAB-Mackay by our side, we know we can give Matteo the best chance to have a normal life.
With our warmest thanks,
Angie and Jonathan
Matteo’s proud mom and dad