The alarm goes off at 4:00 a.m. on Sunday morning, Feb. 19, 2017. I don’t care who you are. Waking up with a 4 on the clock just feels…wrong. For Sandy and Kayleigh Williamson, however, this is the victory bell of a year-long journey. Like every athlete, the morning starts with breakfast, mandatory restroom time, and quiet reflection. Do we have everything we need? Are we ready? Can we do this? The answer today is a resounding “yes.” They hop in the car and 27-year-old Kayleigh immediately shuts her eyes and tries to go back to sleep. She’s got 15 minutes of car time, after all. They arrive at the Austin Marathon race start extra early to ensure a close parking spot and, in the thickness of the early morning humidity, wait at the corner of 6th and Congress to meet their support crew for the 13.1 mile journey of a lifetime.
In 1990, Sandy Williamson was in college in Mississippi when she delivered her baby. It took two weeks to finally get the diagnosis that her daughter Kayleigh had Down syndrome. At that time, the doctor gave her two choices—adoption or institution. Neither was an option for this single mother who went back to classes less than two weeks after her delivery. She was a fighter and her daughter would be, too. When Kayleigh was just one year old, they moved to Austin for a better life and, together, they began their own life marathon in a new town.
Team Kayleigh heads up Congress for the first three uphill miles of the race, alternating between walking and jogging. This will be Kayleigh’s longest race and both her trainer, Gabriel Lucio from 24-Hour Fitness, and her sports physician, Dr. Kim Davis from RunLab, are right by her side with guidance and encouragement. She is also joined by Allie McCann, President of the Down Syndrome Association of Central Texas, along with other friends and RunLab staff members who are there to support the journey. Spectators and other racers run by with words of affirmation and high-fives. They’ve seen her on TV. Mom, Sandy is there but, as she says, she’s being careful not to micromanage. This is Kayleigh’s day.
Kayleigh is a natural athlete who participates in basketball and swimming with Special Olympics through the City of Austin. She’s also a member of the GNAC Program (Good Neighbor Adventure Club) at the Danny G. MacBeth Recreation Center in Zilker Park—a group that provides quality programs to challenge, support, and teach leisure skills for the citizens of Austin with differing abilities. She loves dance, photography, Britney Spears, and men in uniform.
In 2008, when Kayleigh was 18, she was diagnosed with an autoimmune disorder, immune thrombocytopenia (or ITP), which is defined as extremely low blood platelet count. She also developed hypothyroidism which became hyperthyroidism and Graves disease. Medications helped, but a complete change in diet and lifestyle would be necessary to control these conditions.
Just last year, in 2016, influenced by her mother’s four-year running and weight loss journey, Kayleigh wanted to start running, too. With the encouragement of the president of the Austin Runner’s Club, Iram Leon, they signed up for the 2016-2017 Distance Challenge. “Distance” and “challenge” just might be the key words because, even though Kayleigh is very active, she’s never run any formidable distances—and there were health challenges to address.
In April 2016, they signed up for the Divas 5K in Galveston. This race had a strict one-hour cut-off, and in order to make the cut-off, Kayleigh would have to be in better shape. They enlisted the help of Gabriel Lucio from 24-Hour Fitness to help with her strength and endurance. She proudly finished that race with her trademark hair flip and sashay across the finish. Training for the ARC Distance Challenge was up next—or so they thought.
In May 2016, Kayleigh’s blood platelet count dropped to a critical low of 15. Her autoimmune condition reared its ugly head. Doctors recommended surgery to remove her spleen, which required several weeks of recovery and downtime. The surgery was successful, but her dream of finishing the Austin Half Marathon had just become a little more challenging.
Miles six through 11 are tough and lonely. The crowds have all but dissipated, with the exception of a few groups like the Texas 4000 crew and Team BEEF, who stayed en masse early on to cheer as Kayleigh passed. Race crews have to get the aid stations cleared and the roads open per their permitting, so they ask Team Kayleigh to stay on sidewalks and safe areas away from oncoming traffic. At mile six, two of Sandy and Kayleigh’s friends from Weight Watchers join her personal parade, growing the entourage to over 15 people. The RunLab’s Good Time Family Band follows along playing “Eye of the Tiger” on trumpet, sax, and trombone—Sunday runners on Lady Bird Lake can’t help but notice and cheer as she walks by. The heat and humidity start catching up with everyone, so friends and family members hit the grocery for some water as the aid stations have long since been taken down. JuiceLand on Lake Austin Boulevard appears like a mirage at just the right time and a round of Wundershowzens give everyone a new burst of energy. Kayleigh, tired but determined, keeps moving forward down Lake Austin Boulevard toward Enfield Road.
“I’m just so proud of her,” her mother keeps saying over and over again. “Most people would’ve quit by now, but not this girl.” It’s amazing what can happen during the low moments and, as if right on cue, Kayleigh’s basketball coach and two of her best friends, Lindsey and Melissa, show up and began shouting and cheering for their best friend, giving the whole team renewed energy and spirit. Kayleigh, especially, picks up her pace, smiles, cries, hugs, and takes in the love from her friends. She is a new person.
Running, exercise, and weight loss can give you a renewed sense of self and in the last year since her surgery and leading up to these races, Kayleigh has lost and maintained a 40-plus pound weight loss with the help of Weight Watchers and Sandy’s vigilant care of their diet. They opt mostly for a highly organic, whole foods, Mediterranean-style of eating. Her blood platelet count has returned to normal and doctors have declared her Graves disease in remission.
In October of 2016, Kayleigh, Sandy and her trainer Gabriel participated in the Gazelle Foundation’s Run for the Water 10-miler. This incredibly hilly course is challenging for even the most elite runners and she struggled for the last two miles. Still, though, when all was said and done, race staff (including Gilbert Tuhabonye himself) kept the official race clock going and created a finish line just for her along the sidewalk. In typical fashion, the hat went flying, the hair went flipping, and the hips swayed across the finish line in true diva style. “After this race,” said Sandy, “I had a different respect for my daughter. She was no longer the little girl I needed to protect from the world. She was a young woman who could take on the world.”
The 15th Street hill is a monster that cruelly comes at mile 12 of the Austin Half Marathon. You can see it from a half-mile away, but you can also see the magnificent State Capitol building which serves as the view to the Promised Land—the finish line. A police officer arrives as an escort while Kayleigh makes her way down some of the most difficult parts of West Enfield approaching Exposition—giving her support team, now close to 20 strong, an entire lane to themselves. A race director also arrives to provide even more security in the final mile. The police car would inch ahead and stop traffic at major intersections, even hopping on his PA to announce of Kayleigh’s arrival, prompting cheers and celebratory horn honking for this hero.
People want to be of service and, fortunately, Austin has no shortage of kind and supportive people. Many people with Down syndrome are hypermobile, meaning they have a lot of flexibility in their joints. This, in theory, sounds great until you consider that stability often suffers. Hypermobility is frequently accompanied by weak muscle control and lack of strength, which can eventually lead to injury. This was the case for Kayleigh, and she has struggled with recurring ankle pain as a result. Her mother reached out to RunLab for help, expecting the door to be politely (or not so politely) shut in her face. It’s happened time and time again from doctors and health care providers. They hear “Down syndrome” and immediately won’t accept Kayleigh as a patient. Dr. Kim Davis at RunLab, however, enthusiastically opened her doors and her clinic to the Williamsons. “We overhauled her training plan to focus on strength, stability, and a lot of gait training and running technique as a work-around for her excessive flexibility,” said Dr. Davis. “She stuck closely to the training plan and worked on her running technique exercises almost daily. Her ankle wasn’t fully healed by the time the half marathon rolled around, but her hard work paid off, and with small gait adjustments she was able to offload stress on the area enough to complete the race.” And complete it, she did.
Because of her ITP, her right ankle swells to twice its normal size and begins to show discoloration. Dr. Davis closely monitors her for petechiae (blood pooling under the skin) which would make it necessary to pull her from the race. When combined with Kayleigh’s lack of stability due to her hypermobility, even her balance is affected in the final two miles. All the while, though, she remains determined to cross that line.
The best part? They were waiting for her.
The second she hits Congress Avenue, Kayleigh launches into a full sprint toward the finish. This, by itself, is nothing short of miraculous and the greatest demonstration of her tenacity. Crowds cheer as the race announcer welcomes her in over the loudspeaker. She has officially made history as the first person with Down syndrome to finish the Austin Half Marathon!
Time has passed since that historic day, but Kayleigh’s glow has not dimmed. People still come up to hug her and let her know the impact she’s made. Her accomplishment has gone viral on media outlets around the world, running groups across the country are reaching out to their local Down Syndrome Association chapters to develop partnerships, and other races have now asked her if she would be an ambassador for their event.
It’s a passion that started simply because a mother inspired a daughter to be the best she can be.
During her training, Kayleigh would often ask, “Mom, do I inspire people?”
“Baby Girl, you have no idea…”
We provide parents, family members, friends, educators, and medical professionals with relevant, up-to-date information about Down syndrome. They also provide many social and recreational opportunities for families and children.
Sandy and Kayleigh Williamson are available for public speaking engagements to area schools and businesses. Contact Sandy via Facebook.