There are some days that Tom Butler fondly remembers like yesterday, and there are some he’d like to forget.
There are days, like Sept. 6, 2019, that Butler wants to remember. Butler, 39, is in his first season as Great Falls High School’s head football coach, and that day, his team defeated its longtime rival, Lewisville, in overtime.
However, he’d like to forget Dec. 9, 2014.
That’s when doctors told him and his wife, Leighann, that their youngest daughter, Paisleigh, has a terminal disease called Sanfilippo.
Sanfilippo can be described as Alzheimer’s Disease for children. According to the Sanfilippo Children’s Foundation, children with the disease usually have a life expectancy of about 15 years. There is no cure or treatment for the disease, Butler said.
Butler knew on that day that something was bad for Paisleigh, even before the doctor at Greenwood Genetic Center said anything about the results of the genetic test they had gotten back after a two-month wait.
“The doctor walks in, and he is crying, and the nurse is crying, and they tell us she has Sanfilippo. And at the time we had no idea what in the world they were talking about,” Butler said. “She was a little bit delayed 4-year-old at the time, but she could talk and all that stuff.”
From the age of four, when she was first diagnosed, Paisleigh, now 9, should have continued to develop like any child does, but the disease robbed her of that. Since her diagnosis, she has lost the ability to talk, write and draw.
“She can walk still, but you can tell she is hurting,” Butler said. “We were told the life expectancy is 15, but a little boy died this summer at 9, and a girl died at 11, but there is a girl we know that is 23 with it.”
Paisleigh goes to several doctors who monitor her progression and is in different therapies to try and help her, Leighann said.
But the disease will inevitably continue to steal things from Paisleigh, like the ability to walk and swallow.
‘Cheer each other on’
The Butlers came to Great Falls from Westwood High School in Blythewood, where Tom was a defensive coordinator last year.
Butler said the Great Falls community has welcomed his family with open arms. He had never been to a place as small as Great Falls and admitted he was nervous when he arrived.
“I never attended a school or worked at a school as small as Great Falls,” he said. “That was the scary part. I had more kids in my position group at Westwood than I have on our team at Great Falls. That is kind of scary as a guy that has never worked in a 3A school, much less a 1A or 2A school.”
Butler has 22 players on this year’s Great Falls team. This is his first job as a head coach. He has been a defensive coordinator for eight years in four different places, before coming to Great Falls.
“I have a great group of kids,” he said. “They don’t quit. They play hard, and that is half the battle. I feel like we are making some strides at the school. I really lucked out with our kids.”
Not many people have gotten a chance to meet Paisleigh and the Butlers. He said he isn’t very vocal about her disease, but the recent fundraiser the Great Falls and Lewisville schools had for the Cure Sanfilippo Foundation made their case more public.
Per the Chester News & Reporter, the fundraiser raised $4,500.
“When I tell people about it, they blow it off,” he said. “They believe you, but they don’t understand it. I showed a video to the faculty and the kids in my class, and they couldn’t believe it. Once you see the video, it is real to people. When the coaches meet her for the first time, she is just a kid with disabilities, but when you show them a video of her saying her ABCs and singing and dancing and that stuff, then they are like, ‘Wow.’ That is when it hits home to them.”
One thing about Sanfilippo that frustrates Butler is the lack of funding for a cure for the disease.
“No one knows about it,” he said. “There is no money in it. Pharmaceutical companies are all about making money and because there is only one in 70,000 kids that have it, there is no money in finding a cure. They would rather do something about cancer or autism where there is a lot of money to make off people. For us, we are left by ourselves with not a whole lot of people to help us.”
Leighann Butler said social media sites like Facebook help to connect families with Sanfilippo.
“A lot of it is social media because that is the easiest, but we are able to keep up with each other,” she said. “It is good just to see that we aren’t alone in this fight. It is not just us. Seeing other words of encouragement and positive things is what we like. The bad comes in there too, but being able to cheer each other on means a lot to me.”
Butler said he and his wife are exploring the possibility of having Paisleigh enrolled in a drug trial for the disease.
“It is hard to get a drug passed by the FDA to find a cure for it,” he said. “You have to jump through hoops and stuff like that. It is a big to-do, to try and get a trial passed through the FDA. We would love nothing more than to find a cure, but I would settle for no other parent to go through what I am going through.
“That would be worth it for me.”
‘I don’t have my whole life with her’
Sanfilippo has changed Paisleigh, but it has also changed who Butler is as a person.
“If you ask my guys I coached at Greenwood, while I was there, I didn’t have a lot of patience,” he said. “I told them how to do it once and if they didn’t do it, I would find someone else that could do it. Now, with (Paisleigh) and what we have been through the past four years ... I used to pray to God for patience, and He doesn’t give you patience. He makes you earn patience. I am a lot more understanding of situations than I used to be. It is all a testament to Paisleigh. I probably would have been dead of a heart attack if it wasn’t for her. I was always gung-ho and going, but now I take time for my family. We make time.
“I was that typical young football coach that was yelling and screaming all the time. After Paisleigh, I have really become a true teacher on the field. I do yell every once in a while, but I feel like that is a better way to be and the kids respond better than they would yelling and screaming all the time.”
Anyone with young children knows that there are no easy days, but some days are better than others. Butler said that he knows that time is precious now, for him and his family, but that there is no such thing as a day off or downtime.
“Somedays, you just want to sit on the couch and watch football or take a nap,” he said. “But there aren’t any days like that for us. She is always up and doing something or needing something. We don’t have days off, my wife and I. We always have something to do. That is what people don’t understand. I never have a day just to sit in front of the TV and watch football. I used to go to Clemson and (South) Carolina games all the time, but being with her is more important. I got my whole life to go to Clemson and Carolina games, but I don’t have my whole life with her. My wife and I try to spend as much time as we can with her and (older daughter) Ella Kate.”
Leighann Butler said the disease changed her and her husband.
“It changed our outlook on life,” she said. “We try not to dwell on the small stuff, things we can’t change. We can’t change Sanfilippo, we can’t change the diagnosis, we can’t change what we are going through.”
Leighann agreed that her husband has changed as a coach as well.
“There is a lot of things as a football coach that, on the field and off the field, that no matter how hard you try, you can’t change,” she said. “That is just the way things are. We try not to worry about the things we can’t change.”
Leighann said her husband used to be short tempered at times, and even Tom, himself, would agree with that.
“With a kid that has a disability like Paisleigh, you can’t be short-tempered,” she said. “You have to understand that she does things without realizing it and things are out of our control. You have to be patient and work through the situation we are in as calmly as possible.”
‘I took it for granted’
Butler said he had plans for his life in coaching and for his kids’ lives like any parent would. He said he used to plan two and three years down the road — living for the future, rather than in the moment.
“And then we got the diagnosis with Paisleigh and it turned into, ‘How can I make today the best day I can make with her?” he said. “It changes your perspective, and you focus on the right now and not even tomorrow because tomorrow isn’t promised. It is really the way we should all live. When they were born, you think about when they get married and jobs and how am I going to pay for their wedding and that stuff. It really humbled me. It made me worry about today.”
Both of the Butlers are carriers of the gene that causes Sanfilippo, but they never knew it until after the fact. Their oldest daughter, Ella Kate, 11, is a healthy sixth-grader, but she could also be a carrier.
“It is a crap shoot really,” Butler said. “It is not something you would know you would have until it happens. It is something she (Ella Kate) will get tested for when she starts having a family.”
The Butlers lean heavily on the Sanfilippo community of other parents who have children with the disease.
“It is a really tight-knit community,” he said. “We get together about once a year to talk about stuff, because we have problems that other parents don’t really have. It is good for parents to get together and talk so you know you aren’t the only one.”
Paisleigh attends school. She goes to Pontiac Elementary School in Elgin, where the Butlers live. She is in special education classes. Simple things, like having her go to school, are things the Butlers don’t take for granted.
“We know it is coming,” he said. “We take it day by day. We know she is going to have to be in a wheelchair and she is going to have to be fed by a feeding tube. There is a lot of pain in her future that we can’t do anything about. That is part of the disease. As a parent that is hard to swallow, knowing that it’s coming. We just try to make every day the best we can make it for her.
“She can’t tell you she loves you anymore. I remember the last time she told me she loved me. She can’t do that anymore, but she looks at me sometimes, and I know she loves me. And stuff like that means a lot. To hear your kid tell you they love you is something parents take for granted. And I was that guy; I took it for granted.”
“The last time she said, ‘I love you, daddy,’ — that has been like two years.”
He remembers it like it was yesterday.
Mac Banks: firstname.lastname@example.org, @MacBanksFM