MANDAN, N.D. (KXNET) —”This is Addilynn, and she is eight,” Toby Lunstad, mom, said. “She has a variant on one of her CACNA1A genes which is responsible for how the brain cells communicate.”
Addilynn’s mom Toby says the CACNA1A-related disorder led to developmental delays and hypotonia, which is low muscle tone.
Addilynn also suffers from a rare migraine disorder and Lennox Gastaut Syndrome, which is a severe, difficult to treat form of epilepsy.
But the impact wasn’t realized right away.
“In the beginning, it wasn’t that big of a deal because she was small, and we could just carry her around and do the typical baby things,” Toby explained.
But as all kids do, Addilynn grew, and Toby and her husband Shawn quickly realized how much of an impact the disorder would have on Addilynn’s everyday life.
“The first thing was getting a wheelchair for her and then then she outgrew the car seat and got harder to take her in and out of the vehicle, so we got a specialized car seat for her, which we’ve now graduated to an adapted van because she was getting too tall for the car seats,” Toby shared. “She also uses a stander, a gait trainer, we have a ceiling track throughout our house that helps us transfer and get her around, get her in and out of the tub. “
And it doesn’t end there.
Addilynn has a special bath chair, a modified bike, a device to mount her communication device to her wheelchair and different types of sitters to help her participate in everyday activities, including one for the boat so she can safely join the family for outings on the water.
But many of these items are considered “extras,” which means …
“Insurance doesn’t cover,” Toby said. “Even things like bath chairs, they say they’re not medically necessary. They don’t cover the ceiling lifts, they don’t cover the van modifications, the adjustable table, I referenced the bike, the different kinds of sitting setups for her to be able to do things like go on the boat or sit closer to the floor with her friends or her cousins.”
But as Toby explains, most of this equipment is designed to keep Addylynn safe, as well as included.
“She’s a kid. She should be able to ride a bike and she should be able to go on a boat and have fun and feel comfortable. You know? So, in some of those things that are kind of almost like a luxury, because if you don’t have the means to get them, you just don’t get to have them. And then her quality of life is affected. And that’s not fair.”
So, when insurance doesn’t cover the cost of the specialized equipment, it’s up to the family.
“You’re just relying on your own income and maybe the generosity of family or friends, if they feel moved to help,” Toby said. “But there really aren’t resources in the community for these kinds of things to help enhance our quality of life if insurance doesn’t cover it.”
And the cost of the specialized equipment far exceeds what most families could ever afford.
“You’re approaching $10,000 for a simple manual wheelchair, $5,000 for a gait trainer, or a stander,” Toby explained. “And depending on the size of your house, and what you need for a lift system, upwards of $35,000, and modifying a van $32,000, you know, on top of the purchase of the vehicle. So, it’s a lot.”
And that is where an organization like Cpable comes in.
The non-profit provides financial assistance to children with cerebral palsy and similar childhood onset neurological conditions like Addilynn’s.
“We need things like this for families, because there isn’t enough and our kids deserve to be able to participate as much as they can,” Toby said. “And things that they love and enjoy.”
Toby has an overwhelming appreciation for those who are willing to donate to Cpable and help families like hers.
“I just think about the joy she has when we are out on the boat and going fast,” Toby shared. “And she’s excited and squealing and giggling and we’re taking pictures and making memories and without people supporting nonprofits like capable she wouldn’t have that joy in her life.”
And Cpable wouldn’t be possible without donors like you.
“Just know that you are making an impact on a child’s life,” Toby said. “And even though they may not be able to express it with words the families know and they have other ways to tell you.”