If you’re from around the Springfield area you are probably lucky enough to know of Dayton Bullard. If you’re not, Dayton is your average, happy, 19-year old who loves music, goes to school, works, and just happens to live with Williams syndrome. Dayton lives a normal life with a few modifications with her mom Marcia Wickett and her siblings.
The very first thing I want to mention is that Dayton changed my perspective on life and I really hope I can bring to you that effect; the effect her family lovingly calls the Dayton Effect. Despite everything she has lived through and everything she continues to deal with, she is one of the happiest people I have met and all she wants is for you to be as happy as her. I was truly honored to get to know her and I am very honored to bring her story to more people.
Williams syndrome is a developmental disorder that affects many parts of the body. There can be mild to moderate intellectual disabilities or learning problems, unique personality characteristics, distinctive facial features, and heart and cardiovascular problems. The syndrome is caused by a depletion of strands in the #7 chromosome. It is also sometimes referred to as the “cocktail syndrome” because it causes the person to act like they are intoxicated all the time. They are incredibly happy, social, and trusting.
Dayton loves and trusts everyone because she doesn’t believe there to be bad in people. Williams syndrome is also pretty rare. It only affects 1 in 10,000 people worldwide. Because it’s so rare, it actually took the doctors awhile to diagnose Dayton. She was missing the normal milestones and wasn’t walking, even at 13 months. She was suffering some other complications, such as high calcium levels and ammonia.
She also wasn’t gaining weight like other babies; at 13 months she only weighed 13 pounds. Her family doctor referred her to a doctor in Sioux Falls. Marcia walked in to that doctor’s office and after 13 months of not knowing what was going on, he took one look at her and diagnosed her because of her physical features. William syndrome causes elfin features so Dayton’s ears were pointy but there were also no folds so they were a bit floppy. Marcia saved up money and when Dayton was 5 or 6 she paid for plastic surgery for them to fix her ears. Dayton does suffer from some learning disabilities as well as the complete trust of strangers. She loves to hug everybody, which was terrifying when she was younger because of the idea that she could be kidnapped.
Also, Marcia is a germophobe. None of that bothers Dayton, however, because hugging people brings happiness. Dayton also suffers from some health issues concerning her heart. When she was a baby she had a hole in her heart, which all babies have, but hers didn’t heal on its own. Her heart was pumping and the blood was pooling in the hole and going into her lungs, which was causing all her ammonia. Dayton had the hole repaired when she was 3 but she also had a narrowing of a pulmonary artery which they had hoped would fix itself when they repaired the hole. They had hoped that it would be enough to force it to balloon open but it’s still pretty narrow but she has a significant amount of blood flow.
Dayton also has a bleeding disorder which further complicates things. She has Von Willebrand disease which means her blood doesn’t clot very well and causes excessive bleeding from an injury, after surgery, or dental work. Dayton does have a medicine that Marcia can give her before any planned surgery or dental work that helps but it does complicate how fast she recovers from surgery. It was especially bad before she was diagnosed when she was younger and would get nosebleeds or lose a tooth. Dayton also suffers from high anxiety and can escalate quickly to where it can be hard to calm her down. Marcia has found that if she gets Dayton to come to the solution, to make her feel like it was her own idea, it goes smoothly and she can calm down faster. Loud noises can also set Dayton off because Williams syndrome kids have sensitive hearing. People affected by Williams syndrome crave attention and acceptance, even more than people without it. They thrive on the attention and words of affirmation. They want to make people happy and want to help in any way they can.
Dayton has been fortunate to not suffer from too much bullying as most people know the family and Dayton, herself. There have been instances and it’s hard on Dayton who just wants the acceptance from people and it’s also hard on Marcia. “When you know your kid has been through hell and back; I almost lost her when she was born. When you know everything you’ve been through … all you want to do is save her and to have her not feel bad. And you can’t. And when you see a kid or even an adult, making fun of them…you just don’t even know. And this kid would give you anything.”
The biggest thing that is currently hindering Dayton right now is her prolapsed valve. The doctors are trying to move it along as long as possible because once they replace it with a pig valve, she would need surgery every 10-15 years. As she’s only 19, to expose the heart that many times with that much scar tissue would be fatal. Her valve is currently opening differently than ours so when it opens it is throwing blood to the top of her heart which is enlarging her heart. So her heart is working overtime. They are currently going to reevaluate everything in March where they want to do an EET on her and look for alternatives. There has been talk of a transplant but the team of doctors wants to make sure they look at every option to take the best route for Dayton. This all brought about a funny story though. Dayton was recently at the Omaha’s Children’s Hospital to get her heart catheter. She was grandfathered in because her doctor there doesn’t want to let her go as a patient so she was the oldest patient in the hospital. After the surgery when Dayton was coming out of anesthesia she was asked how she was feeling. Her doctor happens to be fairly good looking and Dayton responded with, “all I know is there’s a hot doctor standing by my bed.”
All of this may seem like Dayton may not have a full life but she would assure you that that’s wrong. Dayton goes to school, she works, and she has all the normal responsibilities that her siblings have. Throughout school, Dayton has had a teacher’s aide. As she was getting older and going out for recess, Marcia wanted an extra set of eyes to make sure Dayton didn’t wander off. Marcia bucked the school a little bit as Dayton got older because Dayton was being pulled out of her normal classroom into a one-on-one time more often than she was spending time with her actual peers. Marcia wanted Dayton to be in the classroom with her peers more. She felt the one-on-one time was depriving Dayton of learning the social skills and relating to her peers She also felt it hindered her learning because she didn’t feel as challenged in a setting where she had nothing to compare to. Marcia researched Williams syndrome and classroom settings and wanted her to have that challenge and those peer interactions. Dayton was only ever going to learn what she would learn but it was important that she learned the peer relations and the responsibility of the classroom setting.
Dayton is currently working as a teacher’s aide for Jr. K through the School to Work program. This brings her joy and she loves to do it. She grades papers, reads to the kids, tells them stories, and takes them to snack time. Her favorite thing is the interaction with the kids. She’s also learning life skills such as filling out a time card, the responsibility of having a job and all that is entailed with that. Marcia also makes sure to teach life skills in the house. They have never treated her differently and she has all the normal chores any kid would have. A part of Williams syndrome is a need to please people so it’s not hard for Dayton to want to help out in any way she can. Dayton lives at home currently but she wants to be more independent. She has some of the skills to do so but because of her trusting strangers she would need to be in a facility. Her awareness of strangers is the biggest thing about her independence. An example is, one time when Dayton was walking home from the bus there was a car that was circling her. Someone in the community who knows Dayton and the family saw this and followed her the rest of the way home to make sure she got there ok. They let her walk and made sure not to bring attention to anything so she didn’t get scared, but made sure she got home. “That’s wonderful to me that people would do that for her.” Plus, Marcia isn’t quite ready to go to that step because Dayton has so many opportunities through the Bon Homme school district. Here soon she has an individual education plan to discuss her future. Marcia is hoping that instead of attending classes and doing School to Work that she will enter the work force. This would probably involve hiring someone to transport her to and from work but it would give Dayton a little more freedom which would be a win-win for both Marcia and Dayton. Plus, with Dayton’s current health issues it worries Marcia to let her go away from home. It’s also hard because Dayton is trusting and a giver, so she’s not the best with money.
Music is important to Dayton. Dayton learned a lot through music and it also has a very calming effect on her. Plus, she’s pretty knowledgeable about it. You can ask her who sings pretty much any song and she can tell you. She loves to sing and her favorite song currently is “Attention” by Charlie Puth. She is very social and has a high vocabulary. She loves to use big words which Marcia tells me is common for Williams syndrome; as is gravitating to adults instead of her peers. She does have a good group of friends her age that help her out and are good friends to her. Dayton told me that she wants her job to be something working with kids. She enjoys teaching them and having that interaction. They are generally happy and they get excited to see her which makes her day. Her favorite food is hot dogs and she doesn’t like sadness. She told me her super power is cheering people on. “My instinct is to help people. Like when mom’s having a bad day I try to cheer her up. That’s what I do best.” Marcia told me, “she puts on a cape and she’s going to save their day. There’s probably not a person
in this county that doesn’t know Dayton, that doesn’t love Dayton, that doesn’t smile when they see Dayton. They tell me that I don’t even know how Dayton makes them feel. Even me, I can be having the crappiest day and she’ll be like ‘did I tell you today that you’re beautiful?’ She’s happy – doesn’t hesitate to make others happy. I wish more people had this attitude.”
The community’s love of Dayton was evident last year when she won the title of Frog Queen during the community’s annual 4th of July celebration. Everyone congratulated her and she was lucky enough to be able to pass the crown on to her sister this year. “It was such an honor to be there with my mom and sister in that moment.” There was also the instance during Dayton’s sophomore prom where she was named Punch Bowl Queen. Dayton did half-day preschool and half-day kindergarten with one class.
Marcia loved how Dayton interacted with those kids and how they accepted her but the school and Marcia thought it would be best if Dayton repeated kindergarten. Her original classed moved forward while Dayton stayed back. So when Dayton was a sophomore, the junior class, which was her original class, all got together to make sure Dayton was voted the Punch Bowl Queen. “When Dayton gets something like that it’s like she just won a billion dollars – they don’t understand what that means to her. That was her world.” Dayton told me it was one of the happiest moments and she felt truly honored.
The best thing about Dayton is that it’s hard to be sad around her. She is such a lively person who is so full of love and hope. Her family calls it the Dayton Effect and when you’re around her it’s hard to not see what they mean. Marcia thinks of it as a life lesson. There are rough spots and Dayton has some bad days too, but the good in life far outweighs all of that and Dayton teaches them that every day. Dayton will tell you that she thinks her life is absolutely wonderful and Marcia thinks life with Dayton is absolutely wonderful. “You’re oblivious to any negativity, that’s not always safe, but you only focus on the good and your impact on other people. The need to be good. And a world of music is pretty awesome. And then I think, maybe it’s not so bad. Maybe life’s not so bad.”
