ROCHELLE — A 15-year-old Rochelle girl is hosting a Walk ‘N Roll event to raise money for the Illinois Spina Bifida Association at the Helms Field track on Sunday, Sept. 25 at 11:30 a.m.
Bryn Kissack’s journey began at her parents’ 20-week ultrasound when they were told their baby had a birth defect known as spina bifida. Bryn’s spinal cord did not form properly. There was an opening in her spinal column and her spinal cord was outside of her body. Bryn had a severe degree of spina bifida.
Bryn’s parents, Jennifer and Kyle, were told by their first doctor that the best option was to abort the pregnancy due to the defect. That was not an option for them.
“We knew that God had a bigger plan and purpose for our baby girl and for us as her parents,” Jennifer said. “We went for a second opinion and found a very compassionate and kind doctor who gave us helpful information and options. We ended up in Nashville, Tennessee at Vanderbilt Children's Hospital. We were part of a spina bifida study they were doing at that time to explore new surgeries and options to give spina bifida babies better outcomes.”
Bryn was born in 2006. Her first surgery followed 12 hours later. Over the past 15 years, Bryn has had a total of 14 surgeries, mostly dealing with her spine, brain and legs. Spina bifida is a lifelong condition that causes physical and intellectual disabilities. Bryn has minimal feeling, muscle and movement in her legs due to the severe nerve damage. She wears leg braces for stability and uses a wheelchair to get around. Her condition requires specialized medical care and daily attention to health and wellness.
“Bryn is the most courageous girl I know,” Jennifer said. “Her faith, strength, passion for life, outgoing personality and love for everyone is extraordinary. Bryn leads a very full and productive life. It has always been our goal to keep Bryn active and take all necessary steps to help her become independent and reach her full potential. This journey has been a challenge, but an even greater reward. Our world is a better place with Bryn.”
Bryn is a sophomore at Rochelle Township High School and takes part in extracurricular activities both at and outside the school such as swim team, horseback riding, cheer and managing the volleyball team.
“I'm so glad that I do all of those things,” Bryn said. “And if I find out I'm not able to do something, I'm glad I still gave it a try. I'm 15 and I'm here and I'm living a life that I love. I have a good family that supports me and helps me through everything. I like the condition I have, because it makes me feel special in so many different ways.”
Jennifer said that Bryn looks at having spina bifida more as an ability than as a disability. She’s very determined. The Kissacks have three other children. Bryn is the oldest. She’s the leader of the smaller children in the house. Her 16th birthday is Sept. 25, the day of the fundraiser event. Instead of a birthday party, she wanted to help the Illinois Spina Bifida Association.
The ISBA is a 501c3 charity serving more than 900 families throughout Illinois, including Bryn and the Kissacks. It provides community programs and services for individuals affected by spina bifida as well as research, advocacy, education and support initiatives.
The ISBA has been a big part of Bryn’s life. She wanted to give back to the community that has done “so much” for her and other kids with spina bifida. She goes to the organization’s Camp Independence each year where she meets new friends. The ISBA hosts an independence workshop, holiday parties and support groups for families.
“There's a lot of connection and a lot of support and you can always have people that you can go to and talk to,” Jennifer said. “You're not alone and you're not on an island. There's plenty of support out there."
At the Sept. 25 event, people of all ages can join Bryn and walk or roll by her side on the track. The Rockford Chariots organization will be attending and will bring wheelchairs if people want to wheel the track. Buzzed by Sonset is going to play live music. Ralfie’s BBQ is providing lunch. Registration for the event can be done at www.rochellewalknroll.org and costs $25 and includes a t-shirt and lunch. Register by Sept. 2 to receive a t-shirt.
The event will also include a raffle and community members can donate a raffle basket. Community members can also sponsor the event with a tax-deductible donation. A $500 sponsorship includes a business logo on t-shirts, signage at the event and recognition on social media and print and radio advertising. A $250 sponsorship includes signage at the event and recognition on social media pages.
Sponsor donations must be submitted by Aug. 12 and can be done on www.rochellewalknroll.org under the Tickets and Sponsorship tab, in-person by reaching out to Jennifer at 815-218-9902 for local pickup or by mail by making checks payable to ISBA (memo: Rochelle Walk ‘N Roll) and sent to Illinois Spina Bifida Association, 2211 N. Oak Park Ave., Chicago, IL 60707.