Saving Sammy: One Family, One Disease, and One Little Boy Who Will Change the World
To know 9-year-old Sammy Dunnuck is to be enchanted by him. He doesn't talk much, but he doesn't need to. The eyes tell the story. His long, fluttering eyelashes bring attention to the kindest set of eyes you'll ever see. They dart back and forth, taking in every scene of which he is a part. He sees everything and, chances are, he knows everything too. Sammy seems to be in on a secret that will never be revealed to the rest of us.
When he's excited, or hungry, or overwhelmed with love, he will make a series of squeaks and chirps, like a bird outside of your window, announcing the arrival of spring. To his parents, these sounds hold just as much power as an 'I love you.'
Rollie and Raechyl Dunnuck, Sammy's parents, have had to adapt in order to understand Sammy's language. Sammy, you see, was born with UBTF mutation, a neurodegenerative disease which causes brain atrophy (death). In the broadest definitions, this means that a child could have normal development until about 2 or 3 years of age, followed by a rapid decline in all areas, including: speech, movement, cognition, learning and, finally, life-sustaining skills like eating, drinking, and breathing.
It wasn't something Raechyl and Rollie could detect during the pregnancy, but when Sammy was born, they knew almost immediately that something was wrong.
"From day one we just couldn't figure out what was going on," Raechyl said. "We had feeding issues, a lot of crying that we just couldn't figure out, and reflux. Then we went on to have delayed milestones. We still met them, just a little late. And then when he started crawling, he was kind of dragging his right side behind him."
She continued, stating that "He finally started walking, but he needed a lot of help. And it wasn't until 18 months that he started walking and that right leg just wasn't acting right; it wasn't doing what it was supposed to do. We lost a lot of speech around that time, too."
The Dunnuck's said right around that time is when they got Sammy's first diagnosis: Cerebral Palsy.
"We've had a ton of diagnoses for that kid," Rollie said. "He got a diagnosis of mild cerebral palsy and autism, but they didn't fit. Like, you looked at the symptomology of it, and it just didn't fit. [Doctors] said the autism side of it was basically there because of some of the global delays and the speech, but I never felt right with those diagnoses."
So they saw a doctor. And then another doctor. And another, and another. The health clinic in Casper referred their case to another clinic in Salt Lake City. Sammy underwent various genetic tests but it was a long time before Rollie and Raechyl got any sort of concrete answer. Finally, they got a phone call that they had been hoping for, but also dreading.
"It was a Monday night," Rollie said. "It was chaos, like most Monday nights are. We're trying to get kids fed and dogs fed and boys washed and to bed, and we're doing the dishes and a doctor calls and says, 'Do you have a little bit of time?' And we didn't, but we said 'Sure.' So we started talking to her and she told us that Sammy had a UBTF gene mutation. The doctor said that she did a Google search, because they didn't know about it either, and she read that it is a neurodegenerative, progressive disease. She said there wasn't a general timeframe on how the disease process works and she told us that there really hadn't been any known studies about it.'"
There had been a couple case studies at the time that hadn't been completed, so what Sammy had was, in the truest sense of the word, an extremely rare disease.
"The doctor said, 'We'll find out more as you find out more,'" Rollie stated. "Well, this is awesome. Story of my life. Alright, we'll do it trial by fire and we'll just figure it out as it happens."
After getting off the phone with the doctor, Raechyl and Rollie did some researching themselves.
"I found out that UBTF results in brain atrophy," she said. "It causes your brain to die. Most of these kids [diagnosed with it] end up wheelchair-bound by their second decade of life. They just progressively lose their skills."
And that's what was happening with Sammy. As he got older, Sammy began falling more. He wasn't able to walk as well or stand as well or eat by himself. All of these things that the majority of us take for granted are a daily struggle for Sammy, and for his parents.
"If you think about it as a parent, it's heartbreaking," Raechyl said. "Each thing he loses is heartbreaking, like his ability to walk or his ability to talk. He's losing his ability to eat and he had to get a feeding tube last summer. There are so many things that play into it and each one is heartbreaking. Honestly, we're just putting one foot in front of the other right now, and stuff keeps falling in front of us."
Sammy was diagnosed in 2020, after years of misdiagnoses. Getting that news would have been world shattering even by itself. But shortly after they got the diagnoses, the world locked down, thanks to the COVID-19 pandemic.
"We literally found out less than a month before COVID hit and everything shut down," Raechyl said. "It was a blessing, because I got so much time with him, but we were trying to do Make-A-Wish and that couldn't happen because they won't let him travel. We were trying to do all of these things. Last summer was the 'Summer of Sammy,' and Rollie took time off work and we went camping and stuff."
She said that this summer, they're trying to plan even more events and trips and family functions, simply to make Sammy as happy as he possibly can be.
"Whatever we can do to make his life as good as it can be while he's still at this functioning level, we're going to do it,"Raechyl said. "We're trying to plan a trip this summer as well. We have no idea how we'll do or if he'll be able to walk still or anything like that; we're just trying to trust and go with it. But we do want to try and get him at least one fun trip to the ocean, where he can feel the waves."
Raechyl and Rollie know that the time they spend with their little boy is precious, because they don't know how much time they have left together. They've only known about Sammy's diagnosis for the last year, but they've been dealing with the symptoms of it for his entire life. They're tired. They're beaten down. They're bent. But they're not broken. In fact, if anything, they're even more determined now to raise awareness about UBTF - if not for themselves, than for the other families dealing with this debilitating disease.
Shortly after finding out that Sammy had UBTF mutation, Raechyl got online and began seeking out support groups for fellow parents. There weren't many, simply because the disease itself is so rare.
"When we got the diagnosis, I wrote down what it was called and I got on the internet and searched it and, literally, only like two or three things came up," Raechyl said. "Then, for some reason, I got on Facebook and I found this parent group that only lets people join if they have a kid that's got the mutation. There's maybe eight kids in that group and only four of them are in the United States. They're from all over the world and each case is so different."
There's the 13-year-old girl who is bed-bound, completely unable to speak or move on her own. There's the little boy on the east coast, or the girl in the medical record book that made it to her thirties.
There's the twenty-year-old who just died.
And so on. This mutation is so rare, so new, so different than anything doctors have previously studied, that there's very little information to go on. So much is unknown and, as is often the case, it's the unknown that is the scariest part.
"There's no life expectancy," Rollie said. "There's nothing. There's no research. And we're trying to wrap our heads around it. Like, what timeframe are we looking at? What longevity are we looking at? What are we not looking at? What are we prepared for? So, at times, you kind of dive into the darker spots. And you think that, what if these lasts are our firsts? What if this is the last time he does something or we do something?"
It would be easy to stay in those dark spots, to take up residence there. Certainly nobody would blame Rollie or Raechyl. But that's not something they do. Their minds drift at times, to be sure, but they don't live there. They can't. For their own sake and for the sake of their children.
"We're good now," Rollie said. "We did go through some really bad, dark times. But I can honestly say that if we didn't have God in our lives right now, the way He is now, the presence He is now, it would be a dumpster fire, a complete train wreck. I don't think we would have been able to function the last year. But, now, our family is closer than ever."
And the Dunnuck family decided, fairly early on, that they were going to do everything they could to help other families as well.
"At this point, we're not sure that anything doctors do [in terms of findings] will ever get back to Sammy," Raechyl said. "And we just keep thinking if we had known [what he had] when he was three years old, how different our lives would be. If there was a cure or if there was something we could have done, how different would it have been? So, we would love to be able to help other families. And if that's what Sammy's walk in life is, to be able to help doctors find out more about this in order to help other kids and their parents, that would be amazing."
Rollie agreed, saying that "If there's a way we could help delay this process for other families, or allow them to know early on what is happening, that would be huge. If we could help prolong these other kids' lives or at least give these parents the chance at early intervention, to prepare them physically, mentally, and emotionally for what could happen, or give them the chance to create these bucket lists and knock some things off while their kids still have functionality, that would be huge."
And so, the Dunnuck family created a fundraising page, through the Massachusetts General Hospital, called 'Saving Sammy.' So far, it has raised more than $25,000. And none of that money actually goes to them. It all goes toward research of UBTF.
“The new possibility of research is such exciting news!” the fundraising page states. “ALL money generated goes to Massachusetts General Hospital in Boston, MA and will be used to directly study Sammy and about four to seven other children in the U.S. who have received this diagnoses. The goal is to understand more about the disease, it’s destructive nature and hopefully find a treatment or cure. We appreciate any and all support, sending ‘Sammy loves’ to you all!”
Sammy loves. It's what Raechyl and Rollie call those squeaks and chirps that Sammy makes when he's happy. And, given the circumstances, he's happy a lot. When he's playing at the park, getting pushed in a swing by his dad, or when his mom wipes his face, kisses him on the cheek, and pushes him down a slide, or when his little brother decides to take him for a ride in his wheelchair, Sammy is happy. And boy, oh boy, does Sammy love.
"A big lesson I've learned throughout all of this is to not judge a book by its cover," Rollie said. You look at Sammy, and you see him, and he's in a wheelchair right? He's covered in drool, sometimes food. And he makes some pretty silly, squeaky noises. But those are his happy noises. When he's at school, his teachers and other people would come up to us and tell us how much they miss his sounds radiating off the walls when he's gone. Sometimes it's hard to see the light on the inside, just by looking at the outside."
With Sammy, though, it's pretty easy to see his light. It's a light he has ignited in his parents, in his brother, and in any body who has ever had the chance to meet him.
"He's Sammy Rollie Dunnuck the 5th," Rollie said of his boy. "There's been at least five of us. But he has a real legacy. His legacy is not what I expected it to be, but that kid saved my life. He softened my heart and my mind from my combat trauma and work stuff, and he made me re-seek Jesus. He saved me."
"He saved us from ourselves," Raechyl added.
Legacy is a funny word. It's got big implications. Only the very best of us could ever hope to leave a legacy that actually changes the world. Sammy is the best of us. His life will have a broader impact than his parents ever could have imagined. It will change the lives of countless others. His life could quite possibly save the lives of countless others. And if Sammy - with his long eyelashes and his mischievous grin and his hair cut just like his dad - if he could ask his parents what he was here for, what he was doing, what his purpose was supposed to be, Rollie and Raechyl would look at him, kiss his forehead, and simply say this:
"You're saving, Sammy."
If you want to help Sammy save, visit the fundraising page.