Through The Eyes Of Aunt Shelly
My brother and I are exactly 2.5 years apart. At the young age of two weeks, and after hours of my parents debating his name, I nicknamed him “Pug,” and it stuck so much that many people do not even know his real name is David.
As a parent now, I have such appreciation and gratitude for the childhood Pug and I had. We grew up in the small town of Bradford, Pennsylvania, with two incredibly hard-working parents, grandparents in our lives, and in a rural community where people rallied around one another. Our mom, Nancy, owned Fuhrman Chiropractic Center, and our dad, Dave, better known as “Coach,” was a teacher at Bradford High and the longtime boys’ basketball coach.
We grew up in a household where we were expected to be respectful to adults, do well in school, play sports, be active in clubs, and give back to our local community. Our family was incredibly close — and still is. We took family summer vacations together, ate dinner at the dinner table each night regardless of schedules, and went to St. Bernard of Clairvaux Catholic Church every Sunday. We joked on holidays that the Fuhrman house was “The Friendship Table,” because anyone who did not have a place to go came to our house for Mom to cook for, watch sports with us, or play cards.
We were always “in season” with sports, mostly basketball, and would play for endless hours on the three-quarter fenced-in court in the side yard of our house in West Branch. Our childhood was like a combination of Hoosiers with Dad coaching, especially with the small-town support his teams had throughout the years; Boy Meets World as we were exposed to adolescence; and One Tree Hill with small-town drama centered around sports.
Pug and I went to college, became adults, started our professional lives, and met our significant others, Maggie and Scott, who ironically knew each other from Pitt Bradford before each of us became a couple. We married, moved locations, and Scott and I ended up outside of Annapolis, Maryland, right as Pug and Maggie moved to the Pittsburgh area. We blinked, and before we knew it, Scott and I had two girls, Liberty and Moxie, Pug and Maggie had Eli, and Emma was on the way. She was born in November 2025. We all spent Christmas together and life seemed, well, pretty damn good.
Until January 7.
I will never forget calling my brother on the way into work.
“Emma was admitted to Children’s last night. They’re going to do a brain and spine MRI today, and maybe a lumbar puncture. It’s serious.”
After he shared what they had noticed with her limited movements, I knew this was not a quick stay. I immediately went home, packed a bag, and left for Pittsburgh, not knowing when I’d come back.
I could write pages about that first week in the hospital in January, and again about the week I spent there during Emma’s March admission. But to do that would still only capture a fraction of what it felt like to live it. There were long days, longer nights, confusing conversations, moments of hope, moments of fear, and moments where time felt like it was standing still.
I could tell you about the nurses. The incredible, selfless, deeply human nurses who choose every day to walk into rooms where families are living through the scariest moments of their lives. Nurses who work long shifts, answer questions with compassion, bring calm into chaos, and somehow remember that the parents and family members in the room need to be cared for too. They brought Emma little stuffed animals. They brought Maggie and me chocolates at night as we were winding down. They checked in not just on Emma’s numbers, but on us as people. I will never look at nurses the same way again.
I could tell you about our “hospital Marriott.” Maggie and I quickly decided that sleeping in a cardiac chair was not going to cut it for a week at a time, so every night we blew up an air mattress and tried to create the most comfortable version of a hospital sleep setup we could. It was ridiculous and necessary. It was survival and humor mixed together. In the middle of fear, uncertainty, and very little sleep, you find yourself laughing about the absurdity of blowing up an air mattress in a hospital room and calling it luxury accommodations.
I could tell you about the cafeteria food and how Pug, true to form, would eat chicken tenders and french fries like he was still a kid in Bradford after basketball practice.
I could tell you about showing up in January when Pug and Maggie did not even know I was coming. I walked into the hospital, and my brother just broke down in my arms. He cried and thanked me for being there. There are moments with your siblings that take you right back to childhood, no matter how old you are. In that moment, he was not just a husband or a dad trying to hold it together. He was my little brother. And all I wanted was to take some of the weight from him.
I could tell you about staying with Maggie because I was too afraid to leave her alone. Emma’s respiratory situation was the thing that scared us most, and the idea of Maggie sitting there by herself through the night felt unbearable. So I stayed. We watched monitors. We listened for changes. We tried to sleep, but not really. We took turns being scared and strong.
I could tell you about Maggie asking me to take pictures. Not just pictures of Emma, but pictures of their family together. Because at that point, we did not know what the future held. We did not know if there would be more chances. There is no way to describe what it feels like to take family pictures under those circumstances. You are trying to capture love, but you are also trying not to let your hands shake.
I could tell you about the ups and downs of thinking we had a diagnosis that, given the circumstances, actually felt like good news. Guillain Barre Syndrome was serious, but it had treatment. It had a path. It felt ironic, as our Pap Vince had it when Pug was 6 months old. I thought, as he would say, “son of a gun, that Burkhart blood runs deep!” It turned out, that wasn’t it. So many times, another doctor would come in. Another specialist. Another possibility. Another “we’re not sure.” Another reason to wonder will we actually get a diagnosis or are we going to be on, as some have experienced, the “journey of discovery” that could take years?
There were so many incredibly smart doctors and specialists involved in Emma’s care, and I am grateful for their training, knowledge, and time. But I also learned how much advocacy matters. In a complex medical situation, keeping everyone on the same page is hard. Every specialist is looking through a different lens. Every test result opens or closes a different door. Every delay feels enormous when you are watching a baby and wondering if time is working against you.
One night in January, Maggie and I stayed up reading, researching, and trying to make sense of where we were. SMA was the diagnosis Emma’s pediatrician was originally concerned about, and it was still “on the differential.” And everything you read about it stresses the urgency, the importance of fast treatment, and how motor neurons, once dead, were gone forever. We were scared. We were piecing things together. We were asking questions we never wanted to know enough to ask. We had the “mother’s intuition” this was it. The next day, we pushed hard. We wanted the full team in the room. We wanted to talk about whether Emma needed to be started quickly on oral medication to stop progression if SMA was the concern. We wanted to know whether other tests or procedures could give answers while we waited on genetics. We wanted urgency because, as we were learning, urgency mattered.
Questions and Guilt
In my professional life, so much of what I do, the decisions I have to make, the strategies I have to form, the items I have to execute are all based on asking the right people the right questions. As a business leader, I think constantly about how to ask questions that get to clarity, root cause, value, accountability, problem solving, and results. So I asked questions in the hospital too (so many I think all the doctors had been pre-warned about “the Crazy Aunt in Emma’s room.” I asked about the science, the tests, the timing, the options. But looking back, I wish I had made it more personal. I wish I had asked, “Would you have more regret doing this test today, knowing it’s painful but could tell us something or not doing this test and wishing in two months, if this is the diagnosis, that we had done it?” I wish I had asked, “If this were your child, would you be pushing for this to be done right now?”
Maybe it would not have changed anything. But when you love someone, especially a baby who cannot speak for herself, you replay every conversation. You wonder what else you could have said. What else you could have asked. What else you could have done. It’s hard to not feel a sense of guilt.
I could tell you about March, when my parents arrived with Eli for what was supposed to be his first visit to see his baby sister in the hospital. We had just come back from the EMG, which confirmed extremely low motor neuron function, and a subsequent emotional care conference as we processed the news. We had more information, but still so many unanswered questions and needed a path forward. I had to tell my parents about Emma’s diagnosis. It was one of the hardest things I have ever had to do, as my mom fell apart and my dad put his head in his hands. My parents, who had spent their lives being strong for us, suddenly looked exactly like what they were: grandparents who just wanted their grandchild to be healthy.
Darkest Hour
As a huge Eric Church fan, one song kept running through my head during those hospital days and nights: “Darkest Hour.”
If you were down in a gutter
Where the homeless shudder, trying to shake off the snow
If your tide was low, you lost your rudder
I'd show you where to go
If you were stuck out on the burning sand
Hair on fire in a blinding gale
I'd throw down a rope
And pull you out of your hell
In your darkest hour
Baby, I'd come running (I'd come running)
In your darkest hour
I'd light your way
Baby, don't give up (don't give up)
I'll do everything in my power
To take even a minute of your darkest hour
Life can be a labyrinth
A maze of moments, a pyramid of plans
When all goes south, I'll be your compass
'Til your needle spins you north again
In your darkest hour
Baby, I'd come running (I'd come running)
In your darkest hour
I'd light your way
Baby, don't give up (don't give up)
I'll do everything in my power
To take even a minute of your darkest hour
All I really know is I never know
What's coming around the bend
But you should know you're not alone
Hang on and hold my hand
The chorus of “In your darkest hour, Baby, I’d come running. In your darkest hour, I’d light yoru way. Baby, don’t give up, I’ll do everything in my power to take even a minute of your darkest hour,” played on repeat in my head. The song is about loving someone so much that, in their darkest hour, you would do anything in your power to take even one minute of pain away from them.
That is exactly how we felt for Emma, Pug, and Maggie.
There is a helplessness that comes with watching people you love suffer. You want to fix it. You want to take it from them. You want to trade places. You want to bargain with God.
But when you cannot take it away, you do the next best thing- You show up. You pray. You sit in the room. You grill the doctors with questions. You sleep on the air mattress. You ask questions. You hold your brother while he cries. You stay up with your sister-in-law because neither of you wants her to be alone. You take pictures even when your heart is breaking. You read research. You pray some more. You bring coffee. You make jokes about cafeteria food. You remind them, over and over again, that they are not alone through the darkness… and there are rays of sunshine.
The rays of sunshine
We returned to Emma’s room after digesting the news, and a few minutes later, doctors showed up with papers to sign and said Evrysdi would be delivered within 18 hours. Treatment would start immediately. There was a path of new tests for genetic confirmation, with the goal to get Zolgensma approved ASAP.
Other rays of sunshine were there were stacks of hospital warm wishes from people in Bradford, from our first and second grade teachers, neighbors, old friends, friends from Houston, Pug and Maggie’s friends from Robert Morris, my friends from Notre Dame, coworkers past and present, and people from every chapter of our lives. There were donations coming in, gift cards being sent, toys and blankets, and texts - physical, spoken, and written forms of support. The kind of support that reminds you that the communities we have lived in were never really just places. They were people and relationships. And those people showed up… and continue to.
Welcome to Holland
There is a kind of mourning that comes with letting go of what we all, Maggie and Pug especially, expected life to look like.
Throughout all of this, my longest childhood and best friend sent me the poem “Welcome to Holland.” It describes the experience of planning your whole life for a trip to Italy. You buy the guidebooks. You learn the language. You dream about what it will be like. You know exactly where you are going. And then the plane lands, and you are told you are in Holland and “there you must stay.”
It is not where you planned to go. It is not what you prepared for. And you cannot get back on the plane and go to Italy.
At first, all you can think about is the trip you lost. The place you were supposed to be. The life you thought you were going to have. But slowly, you start to realize that Holland has beauty too. It has tulips. It has windmills. It has its own language, its own rhythm, and its own unexpected gifts.
That poem has stayed with me because it speaks to something I think our whole family has been processing. We are mourning the version of life we thought Emma, Pug, Maggie, and Eli were going to have. We are mourning the simplicity we expected. We are mourning the ease we assumed would be there.
But even in this unforeseen destination, there is beauty.
There is beauty in the way people have shown up. There is beauty in the stacks of cards and warm wishes. There is beauty in nurses bringing stuffed animals and chocolates. There is beauty in grandparents showing up even when their hearts are breaking. There is beauty in the way Eli loves his baby sister. There is beauty in the way Pug and Maggie continue to fight for Emma with everything they have.
There is beauty in Emma herself.
One of my favorite pictures from the hospital is from a day I got her dressed in a Notre Dame “The Shirt” onesie that was a hand-me-down from my girls. It said on the back, “As long as there is unity, there is strength.” At the time, it felt like the perfect thing for her to wear. Looking back, it feels even more fitting because what Emma has done is pulled our family, our friends, and our networks together.
Because that is exactly what we are doing. We are uniting around Emma and giving her strength.
Emma is tiny, but she is mighty. She has already taught us that strength does not always look the way you expect it to. Sometimes strength looks like a baby girl fighting through something no child should have to face. Sometimes it looks like a mother learning a whole new medical world overnight. Sometimes it looks like a father holding it together to pick up his son. Sometimes it looks like a family landing somewhere they never planned to go and choosing, somehow, to still look for the tulips.
Through all of this, one thing has become very clear: no matter what happens, Emma will be loved.
She will be loved fiercely. She will be loved loudly. She will be loved by parents who will advocate for her every day of their lives. She will be loved by grandparents, aunts, uncles, cousins, friends, nurses, doctors, and an entire community that has already wrapped itself around her.
Emma has reminded us what matters. She has reminded us how quickly life can change. She has reminded us that love is not passive. Love comes running. Love asks questions. Love sleeps on hospital floors. Love researches. Love cries. Love laughs when it can. Love keeps going.
And so, we keep showing up.
We show up for Emma. We show up for Pug and Maggie. We show up for Eli. We ask questions. We advocate. We pray. We research. We cry. We laugh when we can. We eat bad cafeteria food. We read every card. We celebrate every tiny win. We keep believing in science, in treatment, in community, and in the power of love.
Because Emma’s story is still being written… and this cast of characters isn’t done yet.
