AUBURN — Mia was a few weeks old when she went on her first hike, tucked inside a sling around mom Ashley Berard.

Berard had loved the outdoors since she was young, fishing and hiking for whole weekends in South Paris, and hoped to pass that passion on to her kids.

When Mia was 8 months old, she was diagnosed with tuberous sclerosis complex. Berard had never heard of the disease, yet it turned out she’d lived with it most of her life. And she’d given it to her daughter.

TSC affects people differently. Ashley had spots on her skin she’d never paid attention to. Doctors eventually discovered tumors on Mia’s kidneys and heart, and additionally diagnosed her with autism and epilepsy.

The daily challenges haven’t kept them inside, though. Now, Berard is looking for other families to join them.

She’s forming a monthly outing group for families with special-needs children — “extraordinary children,” Berard calls them — with a kickoff, easy hike at 2 p.m. Saturday, Oct. 20, on Mount Apatite.

“Even if I only had a couple to five families show up, I’d be happy with that,” said Berard, 30. “It’s just a good way to get your kids out there, get them active.”

According to the Tuberous Sclerosis Alliance, TSC affects one in every 6,000 births worldwide and 50,000 people in the U.S. live with the disease, about the same frequency as Lou Gehrig’s disease. In two-thirds of people it’s caused by a spontaneous genetic mutation. In one-third of the cases, it’s genetic. Its tumors aren’t cancerous but can cause problems by getting in the way.

“That first year was kind of rough,” Berard said. “It was a lot to handle. I felt guilty for quite a while because I’d passed it on to her.”

Mia is now 6. Doctors watch mother and daughter closely. Ashley, too, has tumors in her kidneys. She has one cortical tuber on her brain. Mia has several.

“Every year, we do eye doctors and nephrologists and heart doctors and the list goes on,” Berard said.

Mia is nonverbal, though she’ll do a sign for the word “more.”

“I’ve been working on ‘cheese’ with her because she’s a cheese freak,” Berard said. “There has to be an incentive, otherwise she’s not going to do it. She’s your typical kid in that respect.”

Berard said she’s found the outdoors a good place to teach. It’s quiet, less distraction. Mia can look her mother in the eye, focus on sounds like the crinkle of leaves. They’re outside at least three times a week.

“Usually, it starts at home when I ask her, ‘Do you want to go hiking?'” Berard said. “As soon as she hears those words, she goes for her shoes; she’s ready.”

At their destination, “she’ll look for the trail, she’ll go to it, and she’s just bubbly and excited and she’s got these happy, screechy noises that she makes.”

Berard keeps a blog, Special Maine Adventures, with some of their outings: new hikes, camping, a day at the fair, a trip on a lobster boat. Berard has mulled for about a year the idea of opening their adventures to new friends, for both of their sakes, and to encourage others to take to the outdoors.

“I know I could use a few people in the area who understand what we go through on a daily basis,” she said. “I can’t be alone.”

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“Extraordinary Outdoors! Connecting children of all abilities with nature”

New monthly outing group for parents and children organized by Ashley Berard of Auburn

Inaugural event: Easy hike on Mount Apatite, Auburn (parking at end of Stevens Mill Road)

Date: 2 p.m. Oct. 20

Bring: Appropriate dress and footwear, any snacks and water for yourselves


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