Wyatt is a joyful, determined, and social four year old from Shawnee, Kansas where he lives with his parents, Jolene and Braxton, and three older siblings. Wyatt loves going to the car wash to watch the bubbles, being around loved ones, and music. This month’s ‘Simply Joy’ tee is inspired by Wyatt and his reminder to others to find joy in even the simplest things.
Every purchase in August will go toward making Wyatt’s home safer and more adaptive, including a sensory room. We invite you to watch his video, read his story and subscribe to our podcast to listen to an interview with his parents.
In 2017, Jolene and Braxton were adding another member to their family of five. During Jolene’s pregnancy, everything was typical with some slight concern about genetics, but all the tests came back negative.
Then on November 1, 2017, Jolene and Braxton welcomed their baby son, Wyatt, into the world. Right away, the couple learned that Wyatt had a heart defect but that as long as they kept an eye on it, things would be fine. Once the family got home, they noticed that Wyatt was struggling to eat and didn’t have a lot of energy. He ended up back in the hospital a week later.
At seven months old, the time came for Wyatt to have open heart surgery to repair his congenital heart defects.
But even after, Jolene and Braxton noticed that Wyatt continued to be slow to meet milestones and they began to seek help for answers. Through the process, Wyatt ended up in physical therapy and eventually, the therapist encouraged the family to look into genetics again. Finally in January 2020, Wyatt was scheduled to meet with a neurologist for the whole genome sequencing and the tests came back in May 2020 stating that Wyatt has a diagnosis called Kleefstra syndrome.
Kleefstra syndrome is a rare genetic condition that affects 1:120,000 individuals and is characterized by intellectual and cognitive delays. Other symptoms include heart conditions, vision issues, and hearing loss. A lot of times, kids with Kleefstra syndrome will develop seizures with the onset of puberty.
“As Wyatt gets older, there are a lot of things that we have to anticipate,” Jolene shares, “with the onset of puberty, some kids experience significant regression, so that’s always in the back of our mind. We are working so hard to learn new skills and help Wyatt be as independent as he can. Will he maintain or retain that? We don’t know. There’s a lot of unknown.”
Today Wyatt is four years old and is dotingly known as being pure joy, strong, and determined. He loves going on bike rides, visiting the car wash to watch the bubbles, and watching youtube videos (especially about elevators).
Jolene shares, “He is a lot of fun and loves to laugh, play, and be around people. He remembers things about people, and even though he is nonverbal, he finds ways to connect with them. One of our friends is a musician and Wyatt identifies that friend with the sign for music.”
Wyatt communicates primarily through sounds, gestures and signs, but the family is taking steps for him to be assessed for Augmented and Alternative Communication (AAC).
“Sometimes when kids are nonverbal, it’s easy to think that they don’t care or have a preference, but Wyatt clearly does. I’m excited about the opportunity for Wyatt to use an ipad. There are a lot of things that Wyatt understands, thinks, and feels that he cannot communicate with us. Being able to use AAC will open the door for him to share with us more and will help us know more about what he thinks and feels. Hopefully it will decrease the frustration that he often feels.”
Reflecting on very real times, Jolene shares, “I remember the first time he had a meltdown in a public place and how that felt. It felt like we were on display. He was so frustrated and I had no idea why or how to help him. Sometimes it feels like you work so hard to avoid things and then it happens anyway. By no means is it any embarrassment of Wyatt, but as a friend told me, it’s an example of our biggest grief on display for anyone to see. It’s a vulnerability that you’re not choosing and yet you’re being forced to reveal a deeply ingrained heaviness when your child is acting out in a way because they’re frustrated.”
To any parent who has experienced a similar situation, Jolene recognizes the isolation that comes with a rare diagnosis and encourages you that you’re not alone. “I’ve learned that so many of the feelings and challenges that we are facing as parents to a child on a rare medical journey are the same for parents with typical kids. It may be on a different level but we all ask the question, ‘Am I doing enough?’”
Even when the feelings of inadequacy come, Jolene remembers just how far Wyatt has come in his journey.
“A moment that will always stand out is when Wyatt took his first steps at two-and-a-half years old. We worked so hard to get there. I don’t know what he’ll be able to achieve and accomplish in the future, but watching him take his first steps was so encouraging. I always have to remind myself that things will happen, but in his own time. It’s all on Wyatt’s time.”
Throughout the five years of Wyatt’s life, Jolene and Braxton share that there have been many challenges but the joy that oozes out of him makes it all worth it.
“The biggest gift that Wyatt has brought to the family is the ability to appreciate the small moments. Wyatt’s made us reevaluate what matters in life and think about what is really important. That’s going to make a difference in our lives for the long run. These are the things that matter to us: that we are together as a family, healthy, and experiencing joy and contentment. Even if we are just watching elevator videos or looking at bubbles, we can experience contentment in that.”
Time to get loud shouters!
Throughout the month of August we will be shouting love for Wyatt!
So click here to shop now where every purchase in August will go toward making Wyatt’s home safer and more adaptive, including a sensory room.
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