help us, help him.

Hi there everyone!

For those who don’t know me, my name is Nicole and I’ve had the privilege of adoring and advocating for the most wonderful little boy in the world named Zachary. He is our nine year old son, who over the past couple years- at the expense of a failing medical system, has lost his ability to walk and is now wheelchair bound.

There is a genetic disease that’s been passed along through my side of the family that has progressively gotten worse and worse with the next generations. My son ended up with it the worst, he’s known as a worst case scenario. We’ve been dealing with different doctor’s since he was FOUR and it seems we’ve crossed every excuse- bridge known to man and here we are.

It’s not them who’s suffering, it’s us.

While his doctors take luxury vacations, we as parents have had to watch it progressively get worse and worse with each day that passed. Those in his corner have been forced to sit front row as our son went from fully capable to not capable at all.

His quality of life has been garbage for a long time now.

He can’t keep up with other kids his age, he can’t climb park equipment or run around the way he used to- the way he loved to.

The way every little boy loves to.

You wouldn’t know he’s going through it though, we take pride in the fact he is the happiest, most content and mentally healthy child you’ll ever meet. Especially considering he’s visibly drowning in this condition and we know the pain has officially become unbearable for him.

The disease is degenerative and his feet have been deforming rapidly since age 5.

It’s been confirmed on multiple occasions, by multiple doctors (as we’ve been passed back and forth between McMaster, Ron Joyce & SickKids in Toronto.) that he hasn’t known a life without pain… I can’t shake the thought because he’s been so… Happy.

Always.

Just so happy.

If he can, he will- he doesn’t deserve it but he DOES it.

I’ve never been more inspired by a child’s genuine will to overcome…

He’s amazed us constantly, he’s pushed himself as far as he can in the name of normalcy and as devastating as it’s become- we’ve been humbled completely in his honor.

That being said, without knowing how else to describe it but bullied by the healthcare system- we’d anticipated a surgery eventually (we know the wait times) but the news of it came unexpectedly and with less than two months to mentally, emotionally, physically or financially prepare.

They said this process could be up to a year, where we have to cater, carry and console a child who is bedridden for 10+ weeks TWICE within the next 6 months. (They can only do one foot at a time) and relying on one income/self owned business operations isn’t an option for us anymore as we’re officially stuck between a rock and a hard place.

I am very well aware that times are tough for everyone and that doesn’t go unnoticed or unacknowledged- but that’s why we’re basically coming to you all in hopes of making things feel a little easier around here after juggling all we can on our own… Especially when we have to rearrange our lives entirely, purchase new equipment we weren’t planning on and his father has to take pretty well the entire time post-op off work because due to my own arm disability, I can’t lift or assist our 105 pound, great dane of a child without him…

In order to keep his spirits high, we need to put ourselves first sometimes and that hasn’t happened to date but after many rounds of guilt, tears and hopelessness- here I am, extending our family's story to the online world, in hopes it might do us some good when things in our life feel really, really bad.

His surgery is scheduled for August 29 2024 and it’s at least 5 hours under.

He has a handful of medical conditions that have this mom heart of mine absolutely terrified and in saying that- I want to reiterate that support looks different for everyone and hear me when I say…

A share is enough.

A positive thought / message /prayer extended to my family is enough.

Every one who reaches out regularly, THAT is enough.

If you made it this far it means you care and we thank you kindly because without the life vest that has been social media (all of you) with the constant voice of love and encouragement… I don’t think I’d be as ‘together’ as I feel right now.

If anything, keep us in your heart August 29th.

We love him so much and know you all do too.

Thanks in advance for any and all love sent our way <3

I promise he's worth every penny!