Rylee Hendrikse is taking big steps these days. On May 20 she donned mortarboard and gown and walked the stage as a graduating senior at Olathe South High School. Next weekend she steps out as the “Honored Hero” in Kansas City Take Steps Walk for the Crohn’s & Colitis Foundation (CCF).
Big steps, indeed, especially considering the challenges, pain and courage those steps represent.
Rylee lives with Crohn’s Disease, a chronic inflammatory disease primarily involving the intestines and digestive system. Initially diagnosed with Crohn’s Disease at age 8, Rylee had been in remission for eight years when the symptoms of the disease began to reemerge and ultimately flared in painful and debilitating fashion.
The 18-year-old’s determination and positive attitude in her struggle with Crohn’s Disease over the ensuing months proved inspirational to others. As this year’s CCF Take Steps Honored Hero for Kansas City, she will be a featured speaker and will lead the way for participants who take part in the Kansas City Take Steps Walk on Sunday, June 10, at Franklin Park in Prairie Village. Check in and festivities start at 2 p.m.; the walk starts at 3 p.m.
This will not be Rylee’s first CCF Take Steps Walk. While in remission she regularly participated and helped raise funds. This year, however, she’ll be in the role of Honored Hero.
“I honestly am very surprised to be named Honored Hero,” Rylee said. “I’ve seen and heard all the others and looked up to them. I never saw myself in that capacity.”
Surprised no doubt, but Rylee by her own definition has been a fighter since her Crohn’s flared up in the fall of 2017. “I was not going to let this horrible disease get the best of me, especially during my senior year,” she said.
When the Crohn’s symptoms returned, the resulting pain and other symptoms made it difficult for Rylee to attend school on a regular basis and to keep up with studies. Two months of trial-and-error medication preceded seven weeks where Rylee’s only form of nutrition was formula and water. Doctors inserted a nasogastric (NG) tube, a long narrow feeding tube that went through Rylee’s nose and down into her stomach. “For a little over seven weeks my tube was a part of me,” Rylee said.
The presence of the NG tube and the persisting symptoms of Crohn’s Disease did not stop Rylee. Teachers and students at Olathe South proved understanding and helpful. She remained active in choir and other extracurricular activities. It was a struggle keeping up with classwork, but Rylee managed to keep pace and also benefitted from a concerned teacher who came to Rylee’s house to provide tutoring. Rylee graduated on time and announced she will pursue a degree in elementary education from Emporia State University.
“I had people tell me it may be hard to graduate on time,” Rylee said. “It may sound conceited to say, but I’m very proud of myself for getting through this. It was hard work and a blessing at the same time.”
Rylee credits her strong support system starting with her parents, David and Robin Hendrikse, for giving her the strength to graduate on time and deal with Crohn’s Disease. Other supporters include extended family, friends, teachers, classmates and “my big choir family.” Most certainly Rylee values the support received from her synagogue.
“Congregation Beth Torah has been like a second home to me,” said Rylee. “Some weeks I am there as much if not more than at home. Over the years I have enjoyed participating in the choir, babysitting on Friday nights, volunteering in the community, and being a Madricha for religious school on Sunday mornings.”
Rylee said assisting with the Rosh Hodesh program has been special having gone through the program as a young teenager. She said involvement in BTTY youth group and NFTY have been important factors in her keeping strength.
“Being involved in the Jewish community at CBT has been a great support for me,” Rylee said. “I am so very thankful for my special friends and family there, who help me keep my chin up when I am struggling and celebrate with me when I am feeling well.”