Extraordinary Ordinaries: Silent disease bonds mother, adopted daughter

Walter Allen reports

- Over 1.4 million American adults and children are affected by digestive diseases.

That's no surprise to Leah Nesci, who was diagnosed with Ulcerative Colitis when she was a teenager.

"By the spring of 1986, it was full blown Ulceritive Colitis and I was hospitalized for six weeks, but if effects your whole life. You're afraid to leave the house; you're afraid to go anywhere; you're afraid to eat anything because of the pain and how often you have to do that,” said Nesci.

“I wouldn't go out with my friends,” she added. “They tried to get me to go, but I wouldn't want to go anywhere where there wasn’t a bathroom nearby."

Digestive diseases like Crohn's and Colitis are commonly referred to as the "silent diseases"

"It's not a pretty disease by any means. It's embarrassing; it's not something you like to talk about," Nesci said.

Leah went through multiple surgeries and now considers her colitis to be manageable.

"Thats why I wasn't able to get pregnant…too many abdominal surgeries that the scar tissue may have been too much for me to get pregnant,” she said. “So when we finally gave up trying to get pregnant, we settled for adoption. We said to each other, ‘at least our child won't have Ulceritive Colitis’," Nesci said.

When her daughter Ava was 2, believe it or not, she was diagnosed with the exact same disease, Ulcerative Colitis.

In fact, from 2014 to 2015, the number patients diagnosed with IBD rose from 1.4 million to 1.6 million, with the fastest growing population being children under the age of 9.

Instead of seeing this as a curse, it is instead looked upon as a blessing.

"It gives me a peace and such a calm that this was meant to be -- she is my child, and always has been. Even before she was born, she was my child and was always meant to be in my life and in our lives,” Nesci said.

Their story is why they're being honored at the 2015 "Tampa Take Steps for Crohn's and Colitis" event at the Amalie Arena on October 24th.

While many suffer in silence, Take Steps brings together this community in a fun and energetic atmosphere, encouraging them to make noise and be heard.

Click here for more information.

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