A Letter From a Dream Parent

Declan is a very outgoing and social little boy. He is not shy and loves to talk to anyone and everyone. You would never think he’s been through everything that he’s been through. He tells it likes it is, and has no filter at all - always says what he’s thinking. Declan loves to watch YouTube, play Roblox on his iPad, and video games on his Xbox. He also loves to hang out with his older siblings - he looks up to them.

Even though Declan is out fifth child, he’s still showing us things we’ve never seen before, always keeping us on our toes.

One common questions that I hear a lot is: ‘How did we find out about his heart defect?’ Here’s how: ever since he could move… rolling, crawling, walking, running… he wanted to eat paper products: Kleenex, wipes, paper towel, books, and toilet paper. Let me tell you, he was VERY resourceful because we would take it all away but he still found a way to find something and try to eat it.

Declan's Story

We took him to our family doctor at least five times about this and he would continue to tell me the same thing: ‘It’s a phase, he will grow out of it.’ But it was so persistent that we had to find a new pediatrician, who did blood work that revealed Declan was severely iron deficient. We were referred to a cardiologist, and in the meantime Declan was prescribed iron supplements that helped him stop eating paper within only six days.

After finally seeing the cardiologist in August of 2022, Declan was diagnosed with Supravalar Aortic Stenosis, mildly hypoplastic aortic isthimus, right pulmonary artery hypoplasia, and was on the waiting list to go to Edmonton for surgery. In short, there were many issues with Declan’s little heart. Later, Declan was diagnosed with Elastin Arteriopathy (ELN). Basically, he’s missing the gene that produces the protein to thicken the blood vessels throughout his entire body. Declan is the first person in Manitoba to be officially diagnosed with this condition.

Even after struggling through traumatizing needle pokes, IV insertions, and scans, Declan is a trooper! He was doing blood tests that were sent to Toronto, appointments in Winnipeg, and two intensive surgeries in Edmonton.

This journey for our family has been a complete rollercoaster, up and down with all sorts of emotions. Watching Declan go through all that was heart-wrenching and so difficult. After some time and consideration, we have decided to learn to live with Declan’s medical condition rather than fear it. This has made a huge difference in our lives. Sometimes I wonder how we did it, but when life doesn’t give you a choice, you just roll with it. We know that our baby boy needed us and  we could not fall apart. I also feel like it brought our family closer together and we are much stronger together.

Declan's Dream Came True!

Declan got to meet all his favourite superheroes and had a blast on all the rides at Disney World. But the biggest highlight was when Declan went on a helicopter ride with his brother and his dad!

The trip was full of fabulous memories that Declan and his family will never forget.