A Northwest Indiana Life in the Spotlight: Nathan Hand

Marshmallows, squares of chocolate and graham crackers: most people know the recipe for a good s’more. What most people may not know is that behind Lowell dessert shop Toasted S’mores is the story of a family who continues to beat impossible odds.

Nathan Hand and his wife, Kimberly, have owned and operated Toasted S’mores for the past two years, with a brick-and-mortar location making its debut last October. The shop has a variety of different combinations and space for guests to toast their own marshmallows.

“We love s’mores, and we didn’t see a place that had that specialty. We’ve never seen anything that had flavors of marshmallows and different unique combinations. We wanted to get a little creative and see what we could come up with,” Hand said.

Toasted S’mores was born in part because of the Hands’ 3-year-old son, Jimmy.

Jimmy has TRNT1, an extremely rare genetic condition. Constant hospital visits made maintaining a traditional job nearly impossible for Nathan. Toasted S’mores helped provide some more flexibility.

Jimmy currently lives with a ventilator and tracheostomy tube, and receives nutrition through a feeding tube. He is also deaf following one of his major illnesses. This has just become the Hands’ normal.

“I never would have thought that this would be our life,” Hand said. “When you go into having a baby, you always hear people say, ‘I don’t care, as long as they’re healthy,’ but that’s not really the right way to look at it. What are you gonna do if the kid’s not healthy? We can’t picture Jimmy any other way than what he is; he’s perfect.”

Hand attributes his and Kim’s faith to remaining so optimistic and their relationship with God.

“We give it all to him every day,” he said. “We want to keep Jimmy for ourselves, because we love him, but we realize that, first and foremost, Jimmy is God’s child more than he is our child. If we didn’t have that, I truly don’t know how we would get through it. That’s our solace.”

Jimmy recently spent the last four months at the Children’s Hospital of Philadelphia, a top research hospital for kids in the country.

He is only the 47th known person in the world with the condition. About 90% of the other kids who have gotten this have passed before the age of 4.

“He’s continually beating the odds, and we attribute that to God and just a miracle happening over and over again, and that he has a purpose to be here. The numbers are really not on our side, but every time we’re told that it’s not going to happen, somehow this kid pulls through,” Hand said.

After months away, Jimmy has finally been transferred back to Riley Children’s Hospital in Indianapolis. While it’s still a few hours away from their home in Lowell, the Hands are happy to all be living in the same state again.

“It’s very exciting, very nerve-racking and scary getting our hopes up. We always think that this kid can live a completely normal life. We have not seen anything that tells us otherwise, but we’ve also dealt with a lot of medical professionals telling us that it may not happen,” Hand said.

“It’s a little bit of a struggle, but it’s the life that God has placed in front of us, and we take it full head of steam,” Hand said. “Even though we’re a little stressed out sometimes, the main thing is we just try to do the next right thing – whether that be for Jimmy, our business, or the kids.”

Hand attributes some peace of mind to the support he’s received from his community. They may not have it all figured out, but it’s more about always doing the next right thing.

“We have a lot of family and friends that have helped us out a lot. The community has stepped up quite a few times and offered advice or stories that they’ve gone through and emotional support, or financial support at times. We feel like we’re not in a place to ask for help, because this is just what we’ve been given, and we need to figure it out. We try to do it all ourselves, but even with trying to do that, people still reach out and want to help,” Hand said.

Hand and his wife have three other kids at home. Kim is usually at the hospital with Jimmy, while Hand takes care of the other kids. The separation is hard, but they love to be a part of their baby brother’s story.

“They’re doing as good as any kid could do in this situation,” Hand said. “We know that they are not living a normal childhood, and while that can be difficult for them, we try to encourage them from the fact that we were given this challenge by God, and it’s all for a reason. They’re going to have a story to tell. They’re going to have resilience from this. They’re going to be better people because of this, no matter how hard it is right now.”

They love to share in his wins. Like any kid his age, Jimmy is happy when he’s around people that love him.

“He really loves attention, connection, playing with him,” Hand said. “If you’re there with him, giving him attention, and he’s able to interact with you, it’s his number one thing.”

Hand started a TikTok page, TRNT1 Dad, that features videos of Jimmy’s journey and education about the disorder. While it started as a personal video journal, it has grown into a community of people who want to follow Jimmy’s story or are going through similar experiences. When Jimmy was diagnosed, there were few resources available from families who had been through the same thing.

“I wanted to put more out there about TRNT1 for people to see,” Hand said. “It stinks, but he’s smiling, he’s happy, and he’s living life regardless of his diagnosis.”

In sharing Jimmy’s journey, Hand hopes to provide the kind of information and encouragement his family struggled to find when they first received the diagnosis.