Hunter and Kingston's Story

I have three sons. Hunter is my oldest, he’s 7 years old. He’s a livewire. From the very beginning he was sick all the time. We were in the hospital or the doctor’s office every month with high fevers because of ear infections. He had an umbilical hernia that never went away. I got pregnant with Kingston, when he was 6 months old. By that time, Hunter was just always sick.

To me, I just thought they were normal, but Hunter had a very big head. I thought ‘Oh well, your dad has a big head’. Hunter didn’t start walking until he was 13 months old. He had, ear infections, sickness, coughs, colds. He had a runny nose from just a couple of months old, and it never went away.

When Kingston was born he was in intensive care for 3 weeks. He started off with lung problems and after that it was like he was always on breathing treatments. He always had a runny nose and also had ear infections. Every month or two we were back at the ER or doctor’s office.

You really don’t know what to expect with this disease because it changes every child differently. All three of my children are differently affected by this disease.

In the morning I change their diapers, get them dressed for school, I walk them out one-by-one to the school bus. And then, after school, it’s snacks, dinner, taking care of them, getting them drinks, because they can’t do any of that themselves. We play with them and show them attention til it’s bedtime, and we do it over again the next day.

My sons are all cognitively affected by the disease. We didn’t see a lot of speech until about 4 years old for Hunter. The boys had speech therapy and therapy for their physical ailments and sensory issues. Hunter and Kingston go to a special needs school. As for Kingston he’s pretty much the same, although he’s 6 years old now and he only has about 60 words. He usually only uses 10 words a day. He’s more of an eye contact boy.

We found a really good doctor and, she wanted to test for developmental delays. She said she had a presumption based on the way Kingston looked. The doctor said she wanted to get him tested, and that Hunter might have the same problem. She sent us to a geneticist but we didn’t really know what was wrong until we got the phone call stating that the boys had MPS II. Hunter was 2 years old and Kingston was 14 months.

It was a hard time, lots of tears, lots of denial. You don’t want to think that anything could ever be wrong with your children, your children are perfect, no matter all the runny noses and everything. But I was actually very grateful to the doctor that she caught it just by looking at my children and that we caught it early.

It was right after they were diagnosed I found out I was pregnant with Nash, and we did all the genetic testing. We found out that he was a boy at 8 weeks gestation, and then at 12 weeks I found out he had Hunter syndrome.

The boys bring so much love to everyone. With Hunter, yes he is more aggressive, but he is also the best hugger – the first thing he does when he gets out of bed in the morning is he just wraps his arms around me. Their love for me is what drives me, and there’s nothing a mother wouldn’t do for her kids, and we’re just going to make the best of what we have.

My advice to other parents is to find someone you can meet face-to-face who also has children with MPS II. To see these other little kids and to see all of these boys full of so much love, it just gives you reassurance.

Other parents who are going through this can sit down with you, and tell you what to expect. The doctors give it to you from their standpoint, but they don’t understand it from the parents’ standpoint, where there’s so much more. Being around other families, you know you’re not alone, and throughout this, you don’t want to be alone, you need other people you can relate to. It really makes a difference.

You don’t know how capable you are of loving. Everyone’s going to love their children, but this is like a new level, because you have to appreciate your children for everything they bring. For them, it’s cuddles and love, and you have to be appreciative of those things, and you have to grow from it. I can’t live in the ‘what ifs’. It’s definitely changed me.