Woo embraces disability, represents U.S. at 2023 Virtus Global Games

Woo and her family are very open about her intellectual disability and believe talking about it helps curb assumptions and normalize conversations about disability.

“Sometimes people like to make up a story in their head,” said Woodbury.

People with Williams syndrome often have unique personality characteristics. People who do know Maddie say she is the most curious and outgoing person they know. Without bias or assumption, Maddie will strike up a conversation with anyone and everyone. Unfortunately, these bright, joyous personality traits are almost always coupled with potentially serious physical problems. Woo was born with structural heart defects. More specifically, doctors diagnosed her with peripheral pulmonary stenosis and supravalvular aortic stenosis. These heart defects typically point to Williams syndrome. The veins and arteries from her heart to her lungs were narrowed. A genetic anomaly of the disorder is a microdeletion on one of the seventh chromosomes. The microdeletion includes the gene for elastin, a vital protein that is in all of our connective tissues including the heart and entire vascular system. As she continued to grow, the lack of elastin continue to raise more problems such as new heart defects and structural narrowing in many different veins and arteries.

At a Williams syndrome conference, Maddie and her mom were introduced to equine therapy. Right away, Maddie fell in love with horses and her mom witnessed the incredible therapeutic benefits horseback riding presented. While the family was living in Portland, Woodbury signed Maddie up for a program called Forward Stride. The program offers equine learning and psychotherapy, rehabilitation services and personal development through equine-assisted activities. Once a week lessons quickly became twice a week lessons and eventually Maddie transitioned to a barn that was more focused on learning to jump and the basics of dressage.

Growing up in Portland and then moving to Hood River in seventh grade was a difficult transition for Maddie. Horses helped her cope with her anxiety and opened the door for new friendships.

“With Williams syndrome, I found that it was hard to make friends. It was hard to make connections. And I found through horses it was a lot easier to make friends because we all liked the same thing,” said Maddie.

She joined the Mt. Hood Pony Club where she made friends, and they would talk about their horses for hours. During this time she started working with well-known and local ride instructor named Tedi Paasch.

“It is because of Tedi, her thoughtful dressage instruction, that Maddie has the dressage skills she has today,” said Woodbury.

Paasch is only one of two ride instructors in Oregon who are certified with the United States Dressage Federation (USDF).

Throughout her time with horses and the different riding programs, Maddie would learn how to saddle up and care for a horse on her own. Her horse, named Mason, is a Norwegian Fjord and Maddie is responsible for all of Mason’s care, feeding, mucking, health issues, administering medications and scheduling time with the farrier. Not only do horses suppress her anxiety, but riding and caring for horses improves strength, balance, both gross and fine motor skills.

At the start of her senior year, Maddie began to display a few concerning symptoms which led them to consult with her cardiologist, nephrologist and primary care doctor. They knew things were serious when Woodbury noticed that Maddie was spending less and less time on her horse. Doctors at the Connective Tissues Clinic at Stanford Children’s Hospital — a clinic that specialized in conditions associated with Williams Syndrome — conducted tests and determined that Maddie must have surgery within the next six months or it may see the end of her riding career. Maddie needed to undergo a procedure to repair the mitral valve, also known as open heart surgery, before it became to damaged resulting in the need to replace the valve with a mechanical valve. Surgery was scheduled for August.

The family decided to make a road trip out of it and made it all the way to Palo Alto before the health center called the night before her surgery and were forced to reschedule.

“It was a total blow, because they didn’t have any beds in their cardiac ICU,” said Woodbury. “It was not in my scope of things that could happen.”

“I just wanted it done and out of the way so I could get back to riding,” said Maddie.

After the unexpected postponement, Woodbury stumbled across a Vitrus Games Facebook page looking for talented equestrian riders who also had intellectual disabilities. They started working with a program called Athletes Without Limits right away, helping Maddie apply for the national and international designation, after reviewing a set of standardized tests indicating her level of disability and officially granting her the II1 category, the official category given to elite athletes with intellectual disability.

In the fall of 2022, the Virtus Games held a virtual competition. While she waited for her surgery to be rescheduled, Maddie submitted two virtual dressage tests with hopes of scoring more than a 60 — that would qualify her for the Virtus Global Games.

Doctors rescheduled Maddie’s surgery for October, and once again the family ventured down to Palo Alto. The surgery went smoothly, and Maddie was on her feet walking around the hospital and making friends just 48 hours after open heart surgery. Another stroke of good news came when Maddie was in the ICU, and she learned she had qualified for the 2023 Virtus Global Games. She had scored a 60 and 62 in the fall video competition, which solidified her a spot on Team USA. This would mark the first time Maddie had competed against other riders with intellectual disabilities. She has been riding since she was 7 years old.

Just before leaving for Vichy, France, the American equestrian coach and Maddie’s Athletes Without Limits coach, Courtney Haber, broke her leg and was unable to make it to the games, so the family invited Meredith Stevens, one of Maddie’s longtime coaches.

At the games, many European riders were able to bring their own horses. Other riders, including Maddie, were assigned a horse upon arrival and had only two days to get to know their mount and practice the two dressage tests they would be scored on. Despite the unfamiliar landscape and conditions, Maddie was amazed by the amount of people who were just like her.

“Seeing the other 1,700 athletes, all with disabilities, was mind blowing,” said Maddie. Six other teams from around the world were in attendance including Germany, France, Egypt, Australia, Great Britain and the Chinese-Taipei.

“The atmosphere of the barn was also so cool to watch,” Maddie said. “You could just hear the buzz of the barn and how competitive it was.”

She placed 5th overall in the II1 classification group, earning an average score of 68.793% on the Para Dressage Novice Test A grade IV — one percentage point away from a silver medal. Kerrits Performance Equestrian Apparel, an equestrian apparel company based in Bingen, sponsored the U.S. team, outfitting the equestrian athletes and coaches with red, white and blue practice shirts and a full set of competition clothing.

Returning to Oregon, Maddie reflected on the experience of a lifetime for her and her family.

Maddie continues to train and get Mason back in shape. They will run trails and do practice dressage four to five times a week.

To find out more about Williams syndrome and what you can do to help, visit williams-syndrome.org/what-is-ws.