From left, Dan “Danno” Sikora and his mother, Melissa Sikora, share smiles during a walk. The community recently came together in support of Danno Sikora and his family, raising funds needed to purchase a needed bed for the Negaunee 15-year-old. The bed is needed for his safety, Melissa Sikora said, as he has rare genetic disorder involving sensory-seeking behaviors that can cause him to wander out of bed at night, which puts him at risk for a fall or injury. (Photo courtesy of Melissa Sikora)

NEGAUNEE — The community’s generosity has made a big difference in the lives of a local family, helping to raise thousands of dollars to fund a bed needed for a Negaunee teen who is living with disabilities.

An enclosed bed with soft sides was needed to keep 15-year-old Dan “Danno” Sikora safe at night, as he has a rare genetic disorder and suffers from seizures, self-injurious behavior and wandering at night. This poses a risk to his safety and keeps the family on high alert during the night, said his mother, Melissa Sikora.

The Facebook fundraiser was created by her friend, Janice Chittle, after the family underwent a long and difficult process trying to get the bed covered by insurance, she said.

The community response was incredible, Melissa Sikora said, as the original $5,000 fundraising goal was met within just 24 hours.

“We live in an amazing area, the majority of the funds came from local (people), but there were funds from outside of our area as well,” she said. “People are amazing. When they see those in need, they rise up.”

Danno Sikora was born with CHARGE syndrome, a rare genetic disorder that can impact many parts of the body, including the brain, eyes, nose, ears, heart and digestive system.

He is nonverbal, deaf, legally blind and does not have a sense of smell, which means that he has engaged in sensory-seeking behaviors for much of his life, Melissa Sikora said.

Danno Sikora is also a “spunky little teenager,” who has personality of his own and “is not shy,” as he loves taking walks and being with others, she said.

“We’re known around Negaunee. You’ll see us out walking all over town,” she said. “He loves to check out the siding because he can see the lines in the siding and he loves the brick, the texture. If you see a little dude checking out the corners of buildings, that’s probably my guy.”

Due to his sensory-seeking behaviors, Danno Sikora has had trouble sleeping and staying in bed at night. For many years, a twin-sized bed modified to be crib-like helped him stay in bed at night, but six years ago, he began climbing out at night and wandering, she said.

As he got older, he’s become “increasingly more sensory seeking,” Melissa Sikora said. Since then, they’ve taken his bed down and placed a mattress on the floor, in hopes of reducing the incidents.

“He’s sensory seeking — so he’ll be pounding on things, hitting his head — because his brain is still hungry for the information, so he hurts himself, not meaning to necessarily hurt himself, but just to be receiving information and input,” she said.

This alone resulted in trips to the emergency room and a great deal of worry for his family, but then, beginning in February, he began to have seizures, which further exacerbated the need for a safe place for him to sleep at night. While the Sikoras have been able to control his seizures with medications, they are still searching for answers about why the seizures began.

Between the seizures, wandering and sensory-seeking behaviors, the Sikoras have been on high alert each and every night, as they’re concerned he could be hurt.

With all of these factors, doctors recommended seeking an enclosed bed for his safety, and the family began the hunt for an enclosed bed with soft edges to prevent potential injuries, finding one that is recommended for individuals similar to him.

“You’re just trying to get what your child needs to keep them safe at night,” she said.

But it wasn’t as simple as just finding the right bed. After a long and difficult process of applying and appealing to get the bed covered by Medicaid, Melissa Sikora and her family were exhausted, scared and not sure where to turn next.

However, Chittle, a long-time friend of Melissa Sikora’s who also parents a child with needs, had an idea to help the family.

Chittle put the fundraiser for the bed on Facebook, raising the $5,000 goal in just a day. Since then, even more has been raised to help the Sikoras cover the bed’s cost, with the fundraiser set to run through Sunday, Melissa Sikora said.

She was touched by the tremendous response to the fundraiser.

“I didn’t realize how many people knew about Dan, how many people followed our story until we put that out there,” she said. “I looked on there, and I know 90% of these people that gave. These are people that we personally know who follow our journey, so it’s just amazing.”

While many people may assume that those with serious health conditions will have everything they need covered, Melissa Sikora wants others to know that it’s not always that simple.

“It’s been a fight since the beginning,” she said. “We’ve been trying to get him the things we need and just trying to live daily life.”

On top of this, it can be difficult for parents of individuals with rare diseases to find help for their specific situation, Melissa Sikora said.

“There aren’t a lot of resources to help you walk this path,” she said.

Due to this, Melissa Sikora, along with Chittle and another friend who parents a child with needs, is organizing a support group for parents of “kids with needs, medical needs or special needs, kids who have some complexities,” she said.

“I think we all feel like we’re all blazing our own trail, so if we can help somebody else, (we know) having those friendships and those connections definitely helps us,” she said.

Interested parties can email her at sikora.melissaanderson@gmail.com to be informed of the group’s first meeting, she said.

She also encourages the community to raise awareness and acceptance of those living with disabilities and to not be scared to say “hello,” reach out, or ask questions.

“The more acceptance that there is out there, the more people talk about it, it the better it is for us as caregivers,” she said.

The fundraiser can be found on Facebook by searching “A Safe Bed for Danno” or visiting www.facebook.com/donate/1169443373226850/.

Cecilia Brown can be reached at 906-228-2500, ext. 248.