“NO ONE can prepare a parent to hear that their child has to live with a lifelong medical condition and that there is NO CURE.” - Maria Lester

Maria has lived through this twice. The first time was when her oldest daughter was diagnosed with Type 1 Diabetes at 4-years-old. Then, nine years later her youngest was diagnosed with Crohn’s disease, Celiac disease, and Primary Sclerosing Cholangitis at 6-years-old. After each heartbreaking diagnosis, Maria remembers reassuring her children that everything would be OK. And in those moments, she found her purpose – she was going to do everything in her power to make sure it would be OK. She dove in headfirst, connecting with disease communities to get support and learn all she could about these diagnoses. She said yes to opportunities to partner - to contribute her time and talent to improve the lives of not only her children, but other families walking the same path she has walked. Through this she has learned a powerful lesson – “that when you find your purpose, you realize there is a cause bigger than yourself and shows you the strength you never thought you had.”

Below is Maria’s full #IGNITETALK from our Fall 2019 Community Conference. As you read her words, ask yourself: what is my purpose?

Our son, Grant was an extremely active 13-year-old who played lacrosse and tennis, mountain biked and skied. It was hard to believe he had a disease when he looked and acted so healthy. What caught our attention was an abscess that would not heal. After three surgeries, a series of tests, and a colonoscopy, it was confirmed Grant did, indeed, have Crohn’s disease.

The first question new parent partners often ask is: What should I do first? One of the first projects I worked on with my team was to create “CHOC’s Guide for your IBD Road to Wellness” – a handbook for newly diagnosed families.

My name is Heidi. I’m thrilled to share a bit of our journey…

When my husband & I traveled to India to adopt our kids, 15 plus years ago, it was a journey of senses: taste, smell, touch, sound, and sight. I have learned that parenting a child with a chronic illness is also a journey of the senses. When our 19-year-old son, Stephen, was diagnosed with ulcerative colitis the summer before his junior year of high school, we had no way of knowing where that journey would take us.

Remember potty training your precocious toddler?

Remember running to the bathroom to teach your child the proper way to use the potty? Now, imagine potty training your recently diagnosed IBD toddler. Who would have ever predicted that we would be dashing to the bathroom about 20 times in ONE day? This was our introduction to the world of Crohn's!

My name is Erin, and my daughter Caroline was only 9-years-old when she started losing weight, stopped growing and was exhausted all the time. As she grew sicker, she could not keep up with school, play with her friends, or participate in the activities she loves most: soccer and ballet. It took us almost 18 months to arrive at a diagnosis of Crohn’s disease.

Our IBD journey began over five years ago with our oldest daughter. It presented itself more like a thief in the night rather than a bold, coming out. For three years prior to diagnosis, there was a sense that something was not right, but the clues left were random and independent of each other. Add in a misdiagnosis and it would take someone highly skilled to assemble the clues and uncover the mystery.

Having a parent partner has incredibly enriched the care that our Pediatric Gastroenterology department provides to our patients and their families. It brings a fresh and enthusiastic perspective to our group meetings and has provided valuable feedback for our IBD informational packet that will be given to families.