JACKSON TWP.  Maddy Shanks, an incoming freshman at Jackson High School, is looking forward to being part of the Jackson School for the Arts program beginning this year.

She is passionate about working in theater, choir, dance and writing. She has attended film camp in Lakewood where she wrote and starred in a film titled “Lunch Bunch.” It was shown in the Capital Theatre in Cleveland on July 25.

Maddy is also passionate about raising awareness and money for this year’s Crohn’s and Colitis Foundation’s Take Steps Walk planned for Sept. 14 at the Lock 3 Park in Akron. She will be especially excited because she has been named the 2019 Akron Honored Hero for the foundation.

Shanks was diagnosed on Christmas Eve 2015 with moderate to severe ulcerative colitis. She was in the fifth grade and her mother, Melissa, said that her daughter's carefree life changed forever with that diagnose.

“As a creative, friendly, and optimistic child, she didn’t complain about much more than a stomachache,” Melissa said. “But, after a few months of accelerating and lingering symptoms - bowel abnormalities, weight loss, extreme fatigue, and emotional distress - she was diagnosed with moderate to severe ulcerative colitis.”

After several months of infusions, diet change and illness due to a compromised immune system, Shanks had a reaction to her medication. She was switched to a different injectable medication she can give herself at home every other week.

The new medication brought her into remission in less than four years. Shanks is hoping to raise awareness and $1,500 during the Take Steps walk. She will be speaking about her own story and singing the National Anthem at the walk.

“My support group who will be walking is called the Gut Avengers,” Shanks said. “I’m striving to get a 100 people to join us for the walk this year. With all the groups, the walk usually has around 500 people attend.”

“The board of the Northeast Ohio Crohn’s and Colitis Foundation vote on who the honored hero is each year and this year they selected Maddy," Mellisa Shanks added. "The honored hero becomes the face of the walk each year.”

Shanks has been active in building awareness and support for those with crohn’s disease or colitis. She started the first support group in the area for kids and their parents. The group meets the first Thursday of every month at the Chapel in Green. Information about the support group can be found at https://www.crohnscolitisfoundation.org/chapters/neohio.

Shanks has also volunteered at the foundation’s night out event and sang the National Anthem at the Akron RubberDucks game. Plus, she has volunteered at Akron Children’s Hospital and was its representative for IBD (inflammatory bowl disease). Her photo and story was used on posters around the hospital.

Despite her continued struggles with the auto-immune disease, Shanks has maintained excellent grades in school and is entering the Jackson School for the Arts this fall.

“There were times I couldn’t go to school for two months. I had arthritis and a reaction to the first meds. I missed 60 days in sixth grade. I was able to keep my grades up. The symptoms really started in sixth grade but before that I would always get sick on vacations,” Maddy said.

In addition to taking her medicines, she has to continue to monitor her diet even while in remission.

“This is an incurable disease but with watching my diet, staying active and keeping a good attitude, I can manage the symptoms," Shanks said. "The most frustrating thing is that when I tell people about the disease, they say the don’t know what it is and that’s why I’m doing all the work to build awareness.”

She said she is open about her disease but many of the kids she has met keep it a secret from others unless they meet kids with the same condition.

Learn more about Maddy, her support group and walk team at https://www.crohnscolitisfoundation.org/chapters/neohio.

According to the Crohn’s and Colitis Foundation’s website, the two diseases are known collectively as IBD and it affects an estimated 3.1 million Americans. Crohns and colitis are debilitating, medically incurable diseases that attack the digestive system. The fastest growing patient population is children under the age of 18.

The diseases can attack anywhere along the digestive tract from the mouth to the anus. Ulcerative colitis inflames only the large intestine (colon) and rectum. Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, debilitating fatigue and extreme weight loss.

Learn more at https://www.crohnscolitisfoundation.org/chapters/neohio.