It's hard to raise a child with a rare disorder. This Mass. mom still makes time to raise awareness.

Raising a child can be an immeasurable source of joy, love and meaning. There are also, inevitably, times when it can be extremely challenging. For some families, those challenges are amplified when their child is diagnosed with a rare neurological condition.

Mary Pederson’s son Carter has lissencephaly, a rare neurological disorder also known as “smooth brain syndrome.” She joined GBH’s All Things Considered host Arun Rath to discuss the unique trials and triumphs of parenting under such extraordinary circumstances. What follows is a lightly edited transcript.

Arun Rath: Before we talk about the condition, let’s talk about the person. Tell us about your son, Carter. What’s he like?

Mary Pederson: Carter turned 3 back in June. He is a happy, bubbly, very energetic little boy. He brings smiles to everyone that he meets. He’s just a joy to be around.

Rath: Tell us about lissencephaly. When did you first become aware there was a problem, and how does it affect his life?

Pederson: So he was born on June 4th, back in 2021. He spent some time in the Framingham Hospital, in the NICU, for about a week and a half, and he was incubated. His oxygen levels kept dropping.

The Framingham Hospital just didn’t have the right equipment to really figure out what was going on with him, so they actually sent him over to Tufts [Medical Center]. They did an MRI, and from there, that’s when they found that some of his brain was pretty smooth, so that’s where they found that he has lissencephaly. He was diagnosed two weeks after he was born. And the way that it can really affect him right now is the seizures.

Rath: Tell us a bit about that — as much as you’re comfortable. How is that in terms of his daily life?

Pederson: Yeah. So it started as just little spasms when he was just about 6 months old, so it didn’t really affect him too, too much, and it was easily controlled with medication.

From there, it started to get worse as soon as he turned 3. This summer, we actually spent a month and a half in the ICU at Boston Children’s Hospital due to his seizures.

What happens is kind of a domino effect. He starts to get these seizures. It causes him to have a lot of respiratory issues, so he actually had to have a breathing tube in for quite some time — for about a week — when he was in the ICU at Boston Children’s. He developmentally regressed around that time.

So right now, we’re trying to just really get him into that physical therapy, occupational therapy and speech services to get him back to where he was. But it definitely caused a lot of regression.

Rath: I have to imagine [that] makes the care a lot more difficult.

Pederson: Yes, yes, it does. I’m a single mother, so, you know, I’m doing this 24/7. And he — you know, he’s dead weight. It’s a lot on my body as well when you’re having to pick him up all the time to transition him to somewhere different.

There’s a lot of appointments, so I’m unfortunately not able to work a full-time job, so it’s overall just a very tough experience.

But I mean, you know, you look at him, and you look at his face and that smile, and it’s just worth it.

Rath: You said it started with physical therapy; what is the journey, then, going to be like in terms of recovery and moving forward?

Pederson: Recovery can look very different, especially with every kid that has lissencephaly. It kind of just depends on their spectrum of lissencephaly. With Carter, he has low muscle tone, so he is pretty weak in his arms and his torso and neck area. So, in physical therapy, we’re just trying to have him sit up on his own and just kind of gain some independence for him.

Independence is super important for kids, especially around 3 [years old]. You know, all they want to do is be independent, and right now, Carter … you know, he shows frustration and the want to be independent, so physical therapy is — we’re hoping that physical therapy over time will help that.

Rath: Mary, it sounds about as overwhelming as something could be in terms of what you’re having to deal with on a daily basis. But you’re also taking this extra step to raise awareness about the condition. I’m curious to know what inspired that and how you managed the energy for it.

Pederson: Yeah. You know, my dad has actually been our number one support in trying to find those connections. As far as the Channel 5 News [interview] with [Jessica] Brown, he was able to make that happen for us.

We live in a very small town in Ashland, and we have little concerts every Tuesday in the summer. He started raising awareness with us and stuff, really, when Carter was just a couple of months old back in Ashland, just trying to raise our awareness within our town. And then, I don’t know how he does it, but he finds these connections.

From there, I’m “the face,” he says. He’s like, “You and Carter are the face, and you speak beautifully and you know Carter so well.” So I look at Carter and my dad and, you know, they give me the energy and the support. And my mom, too — I mean, she’s my number one as well.

So just my family, they’re my number one support. They give me the strength and energy to raise this awareness and keep going. Just knowing that there’s not a lot of people that know what lissencephaly is makes me want to raise awareness even more.