By James Bain
Big 12 Campus Correspondent
For most young athletes signing a Letter of Intent to participate in college athletics is a major accomplishment and a proud day for the competitor and their family. Caity Decker and her family experienced this excitement when she signed to row for the University of Kansas in 2011.
“My parents have given me so much support,” said Decker. “I know my signing day at KU was really emotional for them. “
Though the feelings of pride Decker and her family felt are similar to other student-athletes’, Caity’s journey to that day was quite different as she was born with three rare medical conditions: Spina Bifida (seven out of 10,000 births), Tibial Torsion and Von Willebrand disease (less than one percent of the population).
Spina Bifida is a birth defect that affects the spine. When vertebrae do not completely form around the spinal cord, it causes pina Bifida and the spine and nerves are not protected like they should be.
“Luckily for me, it closed pretty quickly and was able to heal,” Decker said. “The main thing that I suffer from now is that I don’t have feeling in parts of my hands and may fingers. It’s not really a huge deal except when I am cooking, I will grab pots and my sister will tell me it’s hot,” she said with a laugh.
Tibial Torsion is an inward twisting of the shin bones. The Pittsburg, Kan., native was born with her shins and feet facing backwards. Her feet were angled in such a way that she crawled and walked with her feet upside down.
“When I was little and not walking I had a metal bar that went across my feet and I had little wooden shoes that screwed into the bar,” Decker explained. “My sister has all sorts of horror stories because we shared a bed and she would wake up with bruises on her shins from me kicking her.”
Caity’s older sister, Jordan, shares that memory.
“My earliest memories were when she was in the leg braces,” said Jordan. “She was always following me around and pretty mobile. One memory I have is getting whacked in the shin by those braces.”
Doctors advised Caity’s parents to get her involved in physical activities in order to improve the strength in her legs and ankles. The doctors suggested gymnastics. So at the age of two and Caity still in her leg braces, her mom started taking her to gymnastics classes.
“I probably didn’t do much because I was two and still trying to use my legs without the braces,” Caity said with a laugh. “I was doing gymnastics, but they also had trampolines at this gymnastics center and my mom said I fell in love with that, so I switched from gymnastics to doing the trampoline.”
Caity continued to wear the leg braces until she was four. By this time she was quite the tumbler and at the age of five, had qualified for her first national competition. Caity kept tumbling through high school and competed nationally almost every year.
Many years later, Caity’s ankles are still a persistent problem. When Caity was in high school she learned how to tape her own ankles for sporting events because she felt bad that the trainers had to do it every day. Today, Caity notices her feet rotate inward when she gets fatigued.
Caity’s third medical condition is, ironically, the one that doctors diagnosed last and the one that causes her the most discomfort today. It is a blood disorder known as Von Willebrand disease (VWD). VWD causes blood to not clot properly which can create massive bleeding from anything from a small scratch or puncturing of the skin. Caity’s VWD exposes itself in the form of nose bleeds.
“A short nose bleed would be six hours long,” Caity explained. “I would have nose bleeds many times a month and miss lots of school because you bleed for a full day and then recovery probably takes two more days. I would bleed for about five hours and then pass out. After about four hours they would put me in an ice bath to cool my body down. ”
Jordan became an expert in how to handle her younger sister’s medical conditions.
“I got really good at taking care of the nose bleeds,” Jordan said. “The teachers at school knew to come get me because I knew what to do.”
When Caity was 12, the Deckers visited Caity’s grandparents in Colorado. The family was at the hospital that Caity’s grandfather managed when one of Caity’s nose bleeds suddenly occurred. The medical staff got Caity to a room. When a doctor came in to ask questions, he quickly knew what was wrong and how to help.
The doctor explained that Caity would have nose bleeds the rest of her life, but the exposed membranes and blood vessels in the nose can be cauterized and burned. The procedure is very painful and has to be done about once a year, but can be extremely helpful to those who suffer from VWD.
After all the medical procedures throughout the years, Jordan is still by Caity’s side.
“Just a couple months ago I had a bad nose bleed,” Caity said. “I called my sister and she took off work and came over to help me since she knows what to do. It’s a routine for her so she helped me get my cold bath ready. She is so supportive and goes with me to get the cauterizations. I’m really lucky to have a sister like her.”
The family bond brings back memories and emotions from signing day.
“Even with someone who does not have these disorders, what she has accomplished is pretty amazing,” Jordan said. “She is definitely one of a kind. When people find out what she has been through, it puts it in a different perspective. It’s just a part of her life. We are all really amazed and proud of her.”
During the recruiting process, Kansas coaches had no idea about Caity’s medical history.
“We just knew she was a strong, athletic individual that we were excited to bring on board,” said KU rowing associate head coach Jennifer Myers. “She handles adversity so well probably because she has been through so much. The team could not ask for a better teammate.”
Not surprisingly, Caity gives the credit for her success to her family.
“I had the right support and everything I could have asked for. That support was everything. Being able to be here and not have to worry about all of my medical things is something I feel blessed about.”