COVID19 & Immune Suppressed Kids

While Canada begins to relax please don’t forget. Coronavirus has taken the world by storm, exposing issues in healthcare, ravaging seniors homes and putting the most vulnerable at risk. As a country we have fought back – for and with each other by being apart. We have stood together by practicing social distancing and kept each other safe as our health care workers fought to protect us, working tirelessly to understand this virus.

For many, regulations are beginning to loosen up. I have had virtual work meetings where people have already started to talk about the things they are doing and are excited to do, and RIGHTFULLY so! It’s been a long three months of waiting and watching for hope, for answers, for progress. But while the people around me begin to relax a little, our family continue to remain isolated and hold on.

I know I am not alone, chances are there’s someone in your life who has to continue to wait.

While my community stood up and stood out for members of our black community I wanted so much to stand with them, to walk with them, to shout out from outside these walls but I can’t.

Who am I? I am a mom of a chronically ill child, of a child whose body is severely immunosuppressed, and a mom whose child has a rare disease.

While our children have faced some of the most difficult and scary days of their young lives over these last few months and we worry for their mental health and the dangers of isolation, my child continues to face all these things while being in pain, while having to go to the hospital for regular treatments exposing his already vulnerable body to the higher possibility of contact with what would be for him a potentially deadly virus.

Over and over I have heard “yeah but the good news is, it’s rare that kids get corona” “rarely have I heard of a kid getting sick”

But did you know that my child’s disease is rare? That most people have never heard of autoinflammatory disease? That he has lung disease? That it’s rare to react to medications? And yet – all of these “rare” unexplained barely fathomable situations we have already experienced?

Telling me that it’s rare or unlikely a child could get a disease like coronavirus doesn’t help, doesn’t bring hope. It just makes me feel a little more crazy. Because the truth is that, this is how I can protect my child, this is what I have to do to keep him alive and well.

So please, as things start to loosen up, please don’t forget those who are still vulnerable in your community, those who have to keep fighting, those who are missing their loved ones so much, yet continue to stay away to protect themselves and those they love. We are so thankful for a community that has stayed strong these past months, and we hope that you will continue to fight with and for us by staying safe, being smart, and keeping your distance. We love you.

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