On World Kindness Day, we’re sharing the story of one incredible girl and her family, who has always chosen to focus on their daughter’s abilities, rather than her disabilities.
This incredible girl’s name is Skyler and she is the daughter of Dustin and Paige DeGroot, and older sister of Adrianna. Her mother, Paige, is Sioux City Buckle’s Co-Manager.
Skyler’s story has not only inspired her family and friends, and those around her, but Buckle Teammates from across the country.
Today, those Buckle Teammates are showing their support by proudly wearing a t-shirt inspired by Skyler, and sharing kindness and Skyler’s story all over social media with the hashtags #ShareYourAbilities and #BuckleBelieves.
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We talked with Skyler’s Mom, Paige, to learn more about Skyler, the inspiration and meaning behind the t-shirt, and the extremely rare syndrome her daughter was diagnosed with in 2014.
Tell us about Skyler:
My beautiful daughter Skyler is twelve years old and in 7th grade. She’s always been the happiest girl! She always has a smile on her face that lights up the room, and she’s always the first one to greet you when you walk in the door. When Skyler was born, Dustin and I did not know that she was going to face any challenges or have a rare syndrome like she does.
What has been your family’s journey to Skyler’s diagnosis?
Skyler was about five months old when we started to notice that she wasn’t doing things that typical kids her age did. We brought her to our family doctor who told us that was she fine. It wasn’t until she was 14 months old that we brought her to a pediatrician, who immediately told us to take her to a specialist because her development was not on track with other kids her age. This was very scary for Dustin and I to hear, so we continued to see specialist after specialist for years and years and years. Skyler was tested for numerous syndromes, but no one could ever tell us why her development had been delayed. At one point, a doctor told us that they believed Skyler had some type of syndrome but couldn’t tell us what it was. The doctor had done every single test, and the only thing they could tell us is that Skyler would never be like other kids her age. As parents, this was extremely hard to accept.
What finally led to Skyler’s diagnosis?
On February 14, 2014, when Skyler was eight years old, she suffered from a grand mal seizure. This type of seizure causes loss of consciousness and muscle convulsions. I was alone with Skyler when it happened, and I held her through her entire seizure. Afterwards, we decided to seek help from Mayo Clinic. It was after Skyler’s third appointment that we received an email from her nurse that said they think they had found Skyler’s syndrome, and that we needed to come to Mayo because they were pulling out the research. Mayo Clinic was not able to tell us over the phone what they thought was Skyler’s syndrome, and we couldn’t get into the clinic for five more days. In those waiting days, I don’t think we ever prayed so hard. It was on November 4, 2014, that Mayo Clinic told us that Skyler had FOXP1 Syndrome.
What can you tell us about FOXP1 Syndrome?
FOXP1 Syndrome is caused by a mutation of the FOXP1 gene. This gene is important for the proper development of our brain, heart, and lungs. The gene controls the levels of protein our bodies need for development. Skyler was the tenth person in the world to ever be diagnosed with FOXP1 Syndrome, and the first case ever diagnosed at Mayo Clinic. Her doctor at Mayo had never heard of the syndrome prior to her diagnosis. Today, there are 50 known cases of FOXP1 Syndrome in the world.
Tell us about the meaning and inspiration behind this t-shirt:
Skyler is the inspiration for this t-shirt because for so many years we just had to focus on Skyler’s abilities, rather than her disabilities, because we didn’t know what her disability was. This shirt is meant to help change people’s mindset, and about choosing to see all people for their abilities, rather than their disabilities.
How did these t-shirts come to fruition?
Over a year ago, I was attending meetings for Buckle Managers and there was a presentation on how much money Buckle had donated to all these great causes that the company supported. This feeling came over me and I thought to myself why can’t we as a company do something to support people with disabilities. When Buckle had a t-shirt design contest, I decided this was my time to submit a t-shirt design for Skyler. Skyler’s Grandmother and I came up with the t-shirt design, and then I showed it to Kari Smith, Buckle’s Vice President of Stores. Three weeks later, Kari personally called me and said Buckle was going to make the t-shirt!
The t-shirts, coined as the DisABILITY T-shirts, recently launched at Buckle, support PACER Center, with 20% of each t-shirt’s purchase price being donated to the organization. PACER Center is a non-profit organization who champions for children with disabilities, and works to enhance the quality of life and expand opportunities for children and young adults with disabilities.
After the t-shirts launched at Buckle, Paige took to Facebook to share her family’s story and the exciting news in a live video. The video has been viewed over 13,000 times, and Paige has been contacted by many people who don’t even know her and have been touched by her story. Paige’s video can be watched here.
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Tell us more about Skyler. What are some of her favorite things to do?
She loves riding her new bike, swinging in her therapy swings, playing piano, and playing with puzzles, squishes, slime, and L.O.L. dolls. Skyler loves dancing and is involved with an awesome dance program for kids with disabilities. She has the best group of friends. Skyler loves her group of friends that’s called “Skyler Squad” at school.
Tell us about Skyler’s little sister, Adrianna, and their friendship:
Adrianna is seven years old and in 2nd grade. Skyler and Adrianna are very close, and Adrianna is Skyler’s biggest cheerleader. She’s always making sure that she is including Skyler when playing with her friends, and educating everyone on why her sister is special. She is always lending a helping hand and knows just how to modify something to make it right for Skyler. Adrianna understands that she is able to do things that typical kids can do, and that Skyler cannot do all things that other kids can typically do. Adrianna pushes Skyler to the best of her best abilities, and is always encouraging her! Adrianna sees all people for who they are and knows that God creates everyone equal.
What has Skyler taught your family, and what can others learn from her?
Skyler has taught us so much! She has taught us not to take any day for granted. You never know what tomorrow could bring, so we are thankful for each day. Skyler has taught us to not sweat the small things because there’s so much more to life than stressing over something so small. Sometimes, people’s biggest challenges are minimal compared to what Skyler faces daily. Skyler faces her challenges with dignity and you would never know about her struggles because her face is always lit up with a smile.
What are your and Dustin’s hopes and dreams for Skyler?
We hope and pray that Skyler can be a change in this world. We pray that she will be the one to change the minds of people who cannot see all people for their abilities. If Skyler’s story or this t-shirt can change the mindset of one person – then we are fulfilling our dreams for her. We pray that Skyler will continue through life with her determination to keep fighting. She has moved so many mountains, and we always tell her to keep going. We are so thankful that God chose us to be her parents. Because of Skyler, we are the lucky ones!
Do you have any advice for families going through similar situations?
If there is anyone that is in our similar position of not knowing the disability that their child has, or even if they do know, I would tell them to never give up. Love your children every day and celebrate the small things – make them the huge things! Celebrate their first steps like it’s a party, celebrate their first word like it could be their last word. Since Skyler’s diagnosis, nothing that we are doing has changed. We are still doing everything we can to make sure she has the best quality of life. FOXP1 Syndrome does not define Skyler – her abilities define who she is!
Tonight, November 13, 2018, from 5:30-7:30 p.m. at the Sioux City Buckle, there will be an event in Skyler’s honor. Those who support Skyler and other people with disABILITIES will gather for a group photo in their disABILITY t-shirts at the store. There will be refreshments for all to enjoy, and Skyler will be in attendance autographing the t-shirts. During the event, information on both PACER Center and Josh’s Rides will be available for people to learn more about the organizations this t-shirt supports.