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TOP PHOTO: Alice Wolfe and her husband Andy Wolfe and Paul and Will Boyer.
By Charlotte Underwood
CAMPBELL COUNTY, TN (WLAF)- Saturday, August 22nd is National SATB2-Associated Syndrome (SAS) Awareness Day. This syndrome is an incredibly rare genetic diagnosis, with approximately only 800 individuals in the whole world who carry the genetics. The state of Tennessee has about six people who have been diagnosed with SAS and two of those live in Campbell County. If you’ve been to a Campbell County Special Olympics event, you may have seen two tall, handsome blond-haired young men, the outgoing one is named Paul and he also manages the Campbell County Softball team, while his twin brother, Will is a lot more shy, according to their mother, Alice Wolfe, who is an educational assistant in the Comprehensive Development Classroom at Jacksboro Elementary School.
Alice Wolfe wanted to help spread the word and raise awareness about the characteristics of SATB2-Associated Syndrome and to do that, she was gracious enough to share the story about her boys Will and Paul, along with some of the January 3rd birthday writings and thoughts she has had over the years.
For their family, it has been long, hard journey to find answers to questions that started at the very beginning when Will and Paul were born.
“Paul and Will were born with a cleft palate of the soft palate at 36 weeks gestation, and it was corrected at three months of age. They were behind developmentally, but doctors said it was because they were twins. They didn’t walk until about two years of age and never really “babbled”, according to their mother Alice Wolfe.
As the boys grew and still weren’t talking, they had to begin speech therapy. They also received occupational therapy and physical therapy through their early years. Doctors continued to do genetic tests with normal results.
“When they were 11 years old, we took them to Children’s Hospital of Philadelphia (CHoP) and got the diagnosis – a mutation of the SATB2 gene, and the doctor could only find one other person with this disorder. So, we left and continued doing what we had done,” Wolfe said.
In 2015, she did a search on Google and came across Dr. Yuri Zarati, who was doing research on this condition. He and Alice chatted and by then, there were about 30 individuals with SAS, mostly in the US, and he had begun a registry to follow them.
“We joined his registry, and we had a meeting with the families in Little Rock, AR, that summer, where we finally met other families in the same boat as us. Since that meeting, the SATB2 Gene Foundation has been established, and resources created to share with schools, medical professionals, and the community. At that first meeting, it was decided to establish SATB2 Awareness Day on August 22, Dr Zarati’s birthday,” Wolfe said.
There are currently about 800 individuals who have been identified with SAS.
Wolfe said to her knowledge, there are 6 individuals in the state of TN with SAS. There is a bi-annual meeting for families, where there are sessions on a multitude of topics (raising SAS kids, toilet training, conservatorships, etc. as well as updates on research and sessions with other medical professionals.
She described her boys and their differences.
“Paul is very outgoing and friendly and is the manager of the Lady Cougars Softball team. He loves people and being in the community. You will see him standing outside Hope+Stand Church most Sundays waiting for his buddy, also named Paul, who is in his 80s. He will shake your hand and smile and never forget meeting you! Will is his polar opposite. He prefers staying home and keeping to himself. When meeting people the first time, he is more likely to growl at you and move in the opposite direction. When you see Will, he will likely have some kind of action figure (Hulk is a favorite) or a stuffed lion,” Wolfe said.
She shared that it was heartbreaking when the boys were young, to realize that many of her dreams for them could never be realized.
Walking didn’t come “on time”, and they were almost two before they took their first, “very wobbly steps.”
“They fell. A lot. Knocking out baby teeth, because they didn’t have the reflex to catch themself and would just face-plant. More dreams – gone. Words. They weren’t there. No mama or dada or bye bye. No words. At all. My heart ached, knowing they weren’t “normal”, or typical. Or just a little delayed. Multiple doctors, specialists, therapists, tests, blood drawn, across the globe from GA to TX to England, to TN to NJ, and they all just said “I don’t know!” Finally, we were given a diagnosis, as the move from NJ to DE was taking place. Did that change them? Nope. Not at all. Did it give me an opportunity to meet and love on a whole new family? Yep! We were among the first given the SATB2 diagnosis.” Wolfe shared.
Both boys attend programs at Emory Valley Center here in Campbell County. They are the youngest of four children. Their sister lives at Scott AFB with her husband, who is active-duty Air Force, and they have five children and their brother lives here in Campbell County and is a sheriff’s deputy, and he has three children.
“The boys love being uncles and will play with them as much as they can. They also have two step siblings, both of whom live in Jacksonville, FL and they have three children between them, with one more on the way. So, the boys have 11.5 nieces and nephews!” Wolfe said. The boys are now young men at age 24 and continue to bless Alice – They also bless Campbell County and all who have the privilege to meet them.
“My dreams have changed for my boys over the years. I grieve for the things they will never do, like drive a car, get married, have a family, work in a regular job, live alone, or go to college. But one thing that I do know. God is good. He is in control. He made my boys perfect. He has a plan for their lives. It isn’t what I had planned, as I carried them in my body. It’s way better. The days can be long and tiring, but in the end, I wouldn’t have it any other way. I can’t imagine my life without my boys being exactly as they are. They are rare (with only around 800 in the world “like” them) and I am BLESSED to be their mamma. “I wouldn’t change you for the world, but I’d change the world for you” Wolfe said of Paul and Will.
And while she still “grieves over what will never be for the boys; she celebrates them and what they CAN do” and how they change the lives of others who take the time to get to know them.
“I celebrate the way they love; they love big; unconditionally. I celebrate their child-like excitement over special days (especially their birthday and Christmas). I celebrate how they have compassion when others are too hard-hearted. I celebrate how they draw others to them, not even realizing it, making true friends along their journey. They are grown men now but will always be my babies. Some days are hard, but every day is an adventure with them. While there are times, I wish things were different (for them, mostly), I wouldn’t change a thing about them. They have shown me what love truly is, and for that, I am eternally grateful. Thank you for making me realize that perfect is in the eye of the beholder. And you, boys, are perfect!!” (WLAF NEWS PUBLISHED-08/21/2026-6AM-PHOTOS SUBMITTED)