Aiden and AJ's Story

Aiden was born a beautiful, healthy baby boy but he had frequent ear infections that we were told were typical. He had two sets of tubes put in his ears and then adenoids removed, when he was a year and a half old. He got colds a lot.

When he was about 2 years old, I noticed Aiden had speech delay. So, I got him into early intervention and his paediatrician suggested that it’s just something that kids go through, he’ll catch up. He had occupational therapy, physiotherapy and speech therapy for a year. Then his paediatrician suggested we see a geneticist because of Aiden’s facial features; he wanted to have it checked.

A week doesn’t go by where we don’t have a doctor’s appointment, or specialist appointment, or a follow up, or a therapy, or a school meeting but, Aiden and AJ do it all with a smile; their strength gives me strength.

Aiden chews a lot. He has a pacifier that he likes to chew on. Their toys are all rubber so they can’t hurt their teeth. If they are excited, at a playground for instance, AJ will run up to the other kid and want to play but he’ll push them. He’s not doing it maliciously, he just doesn’t understand that you have to be gentle. We remind him all the time. They require a lot of attention and work. I always have to keep my eyes on them because they get into things, they get outside, they wander out of my front door.

We like to do anything that makes the boys happy. Whatever they want to do, we all do as a family. We like to go out to dinner together too, believe it or not, they’re really good as long as they have their iPads to keep them busy. We like to be outside, we are very outdoorsy people, and the boys like it too. We’ll play with them and go to the beach.

When we got the diagnosis, my reaction was definitely denial, it was anger. It was a lot of emotions. It was shock. The worst part is that it hits you all at once. It was rough. I had to catch my breath.

We came home and for the rest of that day we were kind of out of it. But by the next morning we both thought, alright, this is the hand we’re dealt and what are we going to do about it? We came in contact with a lot of people who gave us hope. My sister found the MPS society and they called me right away and I was sent information and pamphlets.

My advice is, if you feel like there’s something wrong, just don’t stop. If you notice anything odd, don’t let people brush it off. Get it checked out anyway.

Our support is our lifeline. We were immediately in contact with the MPS society. Because it is so rare, there’s not many of us, so we are all over the world. But there was a family from north Jersey who have two boys with MPS II as well and they pulled us out of a dark spot. The support has been amazing to say the least. The support is from everywhere; our whole community knows the boys. We’re all just very positive all the time. No negativity. It’s just all positive, happy, hope, that’s all we’ve got.

I love every moment with them. I don’t take anything for granted. Every little milestone is huge for us every morning that my boys wake up, it’s a great day. We do everything for them, to make them happy. And we look at everything in a completely different way. It’s changed us for the better. My boys have taught us a lot. You know, they may not be able to speak much but they’ve changed us as people for sure.