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I get a variety of questions… Anything from how did I get this? Is it contagious? When will it go away? What’s the cure? Can they still go to school? Is this gonna be forever?

They definitely feel very isolated because it’s a rare disease– 'It’s' overwhelming to process it.

So, when I speak to a child about CGD, sometimes it’s confusing cause they don’t really know what’s going on inside them and they don’t, they can’t really understand that their body can’t fight off germs like a normal person could.

I just tend to tell them that, you know, when they were made, there was just a little different gene given to them. There was something different in them that came from their parents, and it causes them to be able to get sick faster.

I tell them it’s like a Pac Man. As soon as I mention that, about the Pac Man, their eyes light up and they get excited cause they can visualize that. It’s like a Pac Man that eats up the invader. But inside the Pac Man, they’re missing something that will destroy that infection. And they can’t kill that invader.

CGD is something you’re born with and it’s not contagious. CGD is a condition that you’re gonna have for the rest of your life, but it doesn’t mean it should be something that slows you down.

I usually let them know that it doesn’t mean that they have to be isolated from the world. It’s just that they need to be careful, you know, and that they’re okay.

And I just sort of give them some examples of things. If they get a little tiny cut, they need to be very careful and get it washed out right away as opposed to just continuing to run and play with their friends. And I really try to just get the point across that things that might seem small to their friends can really turn into big things for them.

It sometimes can get very exciting when they learn that they don’t have to do any yardwork. They don’t need to cut the grass or do any of the mulching or rake the leaves in the fall. They will immediately look at their parents and say, did you hear that? Did you hear that? I don’t have to mow the lawn any longer!

When children are ready to go to school, there’s a lot of educational material available. Not only for the parent to prepare for school, but also the school to prepare for the child.

One of the resources I really like to provide for my families is CGDConnections, and there’s also a Facebook page where people can go and connect with each other and talk about the challenges that they’re having or their successes with their journey through CGD.