Daniel's Story

DANIEL’S STORY: A LEGACY OF LOVE, JOY AND GIVING BACK

Daniel’s Story - Told by Maddee Trepp, Daniel's Sister

To know my brother Daniel is to know joy, resilience, and a smile that can light up a room.

Daniel has taught our family that life does not have to look the way we expect it to in order to be beautiful. He experiences the world differently, communicates differently, and has his own routines, preferences, and ways of connecting with the people around him. But beneath his diagnosis is simply Daniel—a person who loves his family, enjoys what makes him happy, and has an incredible ability to bring a smile to those around him.

And that smile is especially meaningful to our family because Daniel inherited it from our mom.

Daniel loves the simple things. He loves watching Barney on his iPad, playing with his little dinosaurs, cooking, going for car rides, spending time with family, and, of course, going to McDonald’s. A McDonald’s trip has a very specific order: a No. 7 with no sauce, a large fry, and a medium Diet Coke. There is something comforting about knowing what Daniel loves and watching how happy those familiar routines make him.

When Daniel visits my home, we have our own routine. We get up and have eggs with muffin toast, take a car ride to Costco, where I shop while Daniel and my dad sit in the car and people-watch, stop at McDonald’s, and then return home for a good afternoon nap. These may seem like ordinary moments, but to our family, they are precious.

Daniel also has a remarkable ability to know the people who love and care about him. He draws close to the people he trusts. Some of the Balance Autism staff have developed such a special bond with him that, much to my amusement, he sometimes prefers to hold their hand rather than mine.

Watching that connection gives our family tremendous peace. It tells us that Daniel feels safe, understood, and loved.

A JOURNEY OF RESILIENCE

Daniel's journey has not always been easy.

For much of his childhood, our family knew that he was developmentally delayed, autistic, and experiencing epilepsy, but we did not yet understand the full picture. In 2009, we took Daniel to Mayo Clinic, where Dr. Elaine Wirrell recognized that he had Dravet syndrome. We had never heard of it before.

That diagnosis changed the course of Daniel's life.

At the time, the medication recommended for Daniel was not available in the United States, so our family traveled to Canada every six months to obtain it. It was a significant commitment, but it was worth it. Before the medication, Daniel was experiencing more than 10 seizures a week. Afterward, he went to having approximately one seizure a year.

For Daniel, it was life-changing. It improved his development, quality of life, and happiness. For our family, it meant something we had desperately needed: we could breathe a little easier.

Before that point, so much of our lives revolved around managing Daniel's seizures and medications. We tried different medications and the ketogenic diet. There were injuries, restrictions, hospital stays, sleepless nights, and constant uncertainty.

My mom spent countless hours filling pill boxes every weekend. Daniel required constant supervision and assistance, and many of his seizures happened at night. My mom slept with him every night, while my dad, sister, and I stepped in whenever we could. There were countless nights when our family was awake with Daniel through multiple seizures.

Those are the parts of a family's journey that people don't always see.

What people may see is Daniel today—a happy man who enjoys Barney, McDonald's, car rides, and being with his family. They may not see the years of advocacy, exhaustion, medical appointments, decisions, worry, sacrifice, and love that helped him get here.

Our family learned that progress doesn't always look like what society traditionally defines as success. Sometimes progress is a year without a seizure. Sometimes it is finding a caregiver Daniel trusts. Sometimes it is simply seeing him smile.

WHAT DANIEL HAS TAUGHT US

Daniel has taught us patience.

Change and transitions can be difficult for him, and many things need to happen on Daniel's timeline—or, as he would probably tell us, on his terms. Learning to slow down, be patient, and meet him where he is has been one of the greatest lessons of our lives.

But Daniel has also taught us resilience.

Even through difficult hospital stays and challenging circumstances, he has a way of making people laugh. He can be goofy, happy, and completely himself, and somehow that brings joy to the nurses, doctors, staff, and everyone around him.

He doesn't pretend to be someone he isn't. He reminds us that there is tremendous value in authenticity and that every person deserves to be known, respected, and appreciated for exactly who they are.

A CAR RIDE, SOME CHEETO PUFFS AND A SPECIAL SMILE

One of my favorite memories of Daniel also captures so much of who he is.

After a family vacation at Table Rock Lake, we were on a nine-hour drive home. Daniel sat beside our mom, holding her hand, and at one point they both fell asleep with their heads resting together. When we finally arrived, Daniel still wouldn't get out of the car.

During one of our stops, we took Daniel into a gas station for a bathroom break. Somehow, he managed to get his hands on a bag of Cheeto Puffs and absolutely refused to let go of them. I told the clerk that I would come back and pay for them.

Once I got Daniel safely back into the car and buckled in, he gave me one of his biggest smiles and proudly said, "You did it!"

He was congratulating himself for successfully getting the Cheeto Puffs.

Of course, I went back inside and paid for them. The clerk just smiled and said it wasn't a problem.

It is a funny family memory, but it also says so much about Daniel. He loves his snacks, he loves his car rides, and he knows what he wants. Most importantly, it reminds me of the incredible bond he shared with our mom.

She was his person.

OUR MOM’S LEGACY

Our mother, Dr. Kellee A. Shey, passed away in May 2024, and honoring her through this gift is deeply personal for our family.

She was patient, kind, caring, hardworking, faithful, and endlessly positive. She believed in family, faith, and serving others. She also had an extraordinary ability to make people feel valued.

She owned her own dental practice, Gentle Family Dentistry, while raising three children with my dad and caring for Daniel. Looking back now, I honestly don't know how she did it all.

She never stopped giving of herself.

She wrote birthday cards. She made treats for Daniel's teachers, paraprofessionals, and staff. She made phone calls to maintain friendships and relationships. She supported her church, schools, and organizations that helped Daniel.

At her visitation, person after person came to tell us stories about her. Many people said that going to the dentist never felt like going to the dentist when they saw our Mom—it felt like catching up with a friend. She had a gift for making everyone feel important.

And then there was her smile.

It was infectious.

Daniel has that same smile.

Our Mom was also incredibly positive. When things were hard, her response was often, "Well, it could be worse."

I have now stepped into her shoes as Daniel's guardian, and I find myself thinking about her often. I don't know how she managed everything she carried with such strength and positivity. She was one of the hardest workers I have ever known and, without question, one of the people I admired most in this world.

Daniel would wait for her to come home from work. When she walked through the door, he would ask her to do things for him. He didn't want just anyone—he wanted his mom.

That relationship was something truly special.

CARRYING HER LEGACY FORWARD

Our decision to make this gift is rooted in both Daniel's story and our mother's legacy.

Our Mom was generous with her time, her resources, and her heart. She believed in giving back to the people and organizations that helped others. After losing her, we wanted to honor her in a way that reflected the values she lived every day: faith, family, compassion, service, and generosity.

We wanted to do more than remember her.

We wanted to continue what she started.

Balance Autism has become an important part of Daniel's story. When his previous placement closed and changed its model to host homes, our family knew we needed to find an organization that could understand and support Daniel's complex needs.

What has meant the most to us is the people who work directly with him. We can see that they genuinely care about Daniel by watching his interactions with them and, most importantly, by seeing his smile.

That gives our family something incredibly important—the reassurance that Daniel is not simply being cared for.

He is being known.

He is being seen as Daniel.

FOR DANIEL, AND FOR OTHER FAMILIES

Our hope is that this gift helps create opportunities, resources, experiences, and support that allow individuals with autism and other disabilities to live meaningful and fulfilling lives.

Families like ours know that support doesn't end when someone reaches adulthood. The needs continue throughout a lifetime, and having compassionate people and strong organizations alongside a family can make an extraordinary difference.

We hope our gift can make another family's journey a little easier. We hope it can give someone a little more hope, create an opportunity for greater independence or connection, or simply help another individual experience more moments of happiness.

For Daniel, our greatest wishes are simple: that he is safe, happy, and healthy.

We want him surrounded by people who see his abilities rather than his limitations, who understand his unique way of communicating, who celebrate his accomplishments, respect his choices, and advocate for him when he needs it.

And above all, we want him to always know how deeply he is loved.

Daniel's story is our family's story.

And woven through all of it is our mom's love.

She gave Daniel a lifetime of care, advocacy, patience, and unconditional love. Now that she is gone, we carry that responsibility forward. This gift is one small way we can carry her values forward, too.

We cannot have our Mom here with us, but we can continue her legacy by loving others, serving others, and helping families who are walking a journey similar to ours.

And every time Daniel smiles, we are reminded that a little piece of her is still here.

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We, at Balance Autism, are incredibly grateful to Daniel’s family for their generous gift and for allowing Balance Autism to be part of their journey. Their support reflects the love, advocacy, and commitment that have surrounded Daniel throughout his life, and we are honored by the trust they place in our team. This gift will help us continue creating meaningful opportunities, resources, and support for individuals and families across our communities, and we are deeply thankful for their generosity and for the legacy of compassion and service they are helping carry forward.