Posted by Erin Spaulding on April 02, 2019
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.
Caroline is now 14 and has adapted to life with Crohn’s. She is in 9th grade, is a high honors student, plays on the high school soccer team and is dancing en pointe in level IV ballet. She does all of this while getting Remicade infusions every 7 weeks, taking 6MP every other day, and getting g-tube feeds overnight for supplemental nutrition.
Support has played a big role in our ability to successfully manage Crohn’s, and for Caroline to thrive. Since diagnosis, her friends have been by her side. They even nicknamed themselves “The Warrior Squad” in her honor. For the past four years, they have walked together and fund-raised for the Crohn’s & Colitis Foundation at our local Take Steps Walk. In 2018 Caroline was named the Youth Honored Hero. She has also attended Camp Oasis since 2015.
Advocacy work has become a priority for us in recent years. In 2017, Caroline and I participated in Crohn's & Colitis Foundation's IBD Day on the Hill in Washington D.C. as patient and parent advocates.
Also, in 2017, I joined ImproveCareNow as a Parent Partner at our care center - Boston Children’s Hospital where Caroline is treated. I take my inspiration from my daughter and hope that through my role as Parent Partner I too am helping to make a difference in the IBD community.
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