Meet our honorees
2017 Adult Honoree- Deb Ostiguy
I was diagnosed with Crohn’s disease in 1984. This disease not only has affected me for the last 33 years but also my brother and more recently my son, Garrett was diagnosed with Crohn’s at the age of 11. I am humbled and honored to be the 2017 Adult Honored Hero for the Crohn’s and Colitis Foundation and Western MA Take Steps Walk.
After 4 bowel resections, an abdominal wall reconstruction and many medications, I have been disabled and retired from emergency medicine for 15 years. More times than I can recall, when I have felt my worst I still get a “you don’t look sick!” comment. IBD truly can be an invisible disease.
When my son Garrett was diagnosed, it was an eye opening experience. It was unsure if I prepared to support him in all the ways he needed knowing the roller coaster he had ahead of him from my firsthand experience. I knew I could not do this alone and that is when I decided to team up with the Crohn’s and Colitis Foundation network and become more involved. I am thankful I did.
I travel across the US to go to symposiums, walks and to talk to other parents and patients. I am also the founding chair for the Baystate Pediatric Gastroenterology Parent Advisory Counsel. I also am the Communications Lead for a huge collaborative network of Parents of Children with IBD. Even still, I am always wanting to do more because I strive to find the cure – if not in my life time, at least in my son’s.
It is time that we, as an IBD community, become more vocal about what can be an embarrassing disease. We need to transform care, identify best practices, lower drug costs, increase remission rates, and be more informed about the Restroom Act… and make informed decisions about our treatment. The most tangible way we can make an impact is by raising money to accelerate the pathway to cures!
In addition to fundraising, I will continue to be an advocate for the IBD community. The Take Steps Walk is a fun way to raise money and awareness. I have made it my personal mission to meet others with IBD and hear their stories. Alone you can go far, but together we can go further!
2017 Pediatric Honoree- Matthew Balise
In third grade when I was 7 years old, I was diagnosed with Crohn’s disease. The year leading up to my diagnosis, my height began to slow, my eating habits changed, and I lost lots of weight. My mom and dad did not notice the changes until a trip to Florida in February of 2012. During our vacation, I suddenly got the influenza virus. When I returned home, my abdominal pain increased dramatically which prompted my parents to take me to Baystate Medical for a colonoscopy/endoscopy. These tests revealed significant amounts of ulcers throughout my entire digestive track.
My stomach felt like a volcano, constantly erupting making my life miserable. My doctor at the time recommended a biologic infusion but my parents were apprehensive start me on an infusion treatment just days after being diagnosed. While we discussed treatment options, my doctor decided to give me a steroid in the meantime to help me cope with the pain. As a result of the steroid, I got my appetite back but with that also came a significant amount of bloating.
My family and I decided to seek a second opinion at Boston Children’s Hospital. We met Dr. Athos Bousvaros in early summer of 2012. Dr. Bousvaros decided to wean me off the steroids so I could start treatment to hopefully put myself achieve remission. Despite all efforts to avoid the biologic infusion, I started it in August of 2013 after many failed attempts at other therapies and a trip to the ER in the winter of 2013. After only one infusion I felt better.
My Crohn’s symptoms lessened and my life became normal again. So, after countless trips to the bathroom and hundreds of appointments, I now live a normal life with my “best friend” Mr. Crohn’s who currently stays dormant in my body until it hopefully cures are found. I fundraise with Take Steps because I know remission is not a cure and I want to do all I can to contribute to the efforts of the researchers and Crohn’s & Colitis Foundation trying to find cures. I may only be only a young teen, but I know the dollars I raise make a difference.