Wesley’s Story

Written by Wesley’s Mom

My name is Victoria and I have two children, Wesley and Savannah. I always dreamt of having two children somewhat close in age so they could grow and play together, however life had very, very different plans for us.

Savannah was born over 6 years ago, a healthy little girl. However, her brother Wesley, now 4, would be hiding quite the surprise for all of us. He was born with a very rare genetic condition called 21q21 deletion syndrome. We had no idea anything was wrong, so you can imagine the surprise and grief felt when he was first born and immediately knew something was wrong based on certain features. The tests ran after started to confirm our suspicions and I was left with endless questions. Brain, eye, heart, and kidney defects. Bone marrow failure right from birth (thrombocytopenia). Over the years other issues arise or are discovered, like very poor gut motility requiring a g and j tube, asthma, acute respiratory distress syndrome, seizures, dystonia, recurring fevers, anemia, and more… the list could go on.

Wesley is non verbal with low vision and only recently learned to sit on his own, however he still requires a wheelchair and tons of support in every aspect of life. He has spent as long as 7 months in the hospital at a time. Often they are long and scary admissions requiring PICU at times; and he’s probably spent half his life or more there.

Although he needs weekly platelet transfusions at Mac, and deals with weekly fevers and breathing difficulties, plus all of the in between issues that require hospital admissions, he is by FAR the happiest child. He loves music, dancing, sensory lights, going for walks, peppa pig, swimming, and so much more….. He laughs often and always bounces back despite the circumstances.

As you can imagine, our life comes with a lot of extraordinary and unexpected expenses. It is also not possible for me to work, so I stay home to provide the care my children, and especially Wesley needs.

We discovered the Sarah Tapley foundation through friends during a long admission, and we have been able to find relief financially from all of the extra expenses involved with going back and forth from Niagara to Hamilton for appointments ; as well as expenses acquired from being admitted in hospital and so on. It has helped take so much weight off of my shoulders and I am incredibly grateful for it. Not only that, I am provided with someone to talk to. I think that is the most special part about it all, that they are not just a source of financial relief, they are available to chat and listen to the journey we live. This has been so valuable for me and I don’t think I could ever thank them enough for what they do.

There may never be the right words to express my gratitude, but I would still like to thank The Sarah Tapley foundation for supporting our family, and especially thank you to Abby for being an emotional support for me. We really couldn’t do this without you!