Honorees
Honored Heroes share their stories to let other patients know they are not alone on their journeys — because no one should face the challenges and uncertainty of inflammatory bowel disease (IBD) in isolation. Through their stories, Honorees raise awareness of these diseases, raise funds to support the Foundation’s mission and inspire hope in those living with IBD.
PEDIATRIC HONORED HERO: NICK JOHNSON
Nick is a quiet 13 year old boy who loves to do a variety of things such as playing baseball and basketball, fishing, hunting, crabbing, and doing a variety of crafts from drawing to building/creating things. On the outside you would say he is a typical kid, but it is what you cannot see that he hides so well. Nick has Crohn’s disease.
Nick was always quiet and nervous. So, when he started having diarrhea and sometimes blood in his stool, his family initially thought it was his nerves. However, when they realized he was not growing, they took him to see a specialist. He had his first colonoscopy in 2018 and that one only showed a dilated colon with a tight ileocecal valve that they could not get past and his biopsies were normal. Then, in May 2020 when he was still not getting any better and still not growing, he had another colonoscopy. That one confirmed he had Crohn’s disease in his distal ileum, the part of his bowel the first colonoscopy could not reach. That diagnosis was a blessing and a curse for Nick’s family. A blessing in that they finally knew what was wrong and could start treating it, but a curse in that it would take another 2 years to find a treatment that worked. Click here to read the rest of Nick's story.
PEDIATRIC HONORED HERO: SOPHIE NEFF
Sophie just kept getting worse. She was experiencing pain she had never felt and we couldn’t help her through. We felt helpless, but Sophie felt helpless in addition to being in absolute misery several times a day. We would hear Sophie bawling, crying in the bathroom. Through tears and labored breathing, Sophie would call for her mommy and ask for her stuffy, “Freedom”. Tylenol and Ibuprofen couldn’t help the pain she was going through. Some nights, Sophie would wake up crying in pain from seemingly unrelated cramps in her feet and calves, asking her daddy to stretch her legs to relieve the pain. We would work the painful cramps out and, after some recovery time, she would be able to go back to sleep.
All of a sudden, Sophie wasn’t able to eat certain foods because she was mysteriously getting cuts throughout her gums and inside her cheeks. She had to start taking Anbesol to school to help ease the pain of all the cuts inside her mouth. One morning, we noticed bruises all around Sophie’s ankles and could only guess that it happened at soccer practice the day before. Over time, we realized that they were not from sports and were periodically there for good.
After 4 months of these symptoms and more gradually getting worse, we found out why… Click here to read the rest of Sophie's story.
HEALTHCARE PROFESSIONAL HONORED HERO: GRACE CRUZ, RN BSN
Grace Cruz has been a nurse for 20 years. She has been serving patients in the DMV since 2008. She is the Infusion Clinical Director and Infusion Nurse at ARISE Infusion with Arthritis & Rheumatism Associates in DC, MD, and VA. She was first introduced to patients with Crohn's and Colitis when she was a transplant nurse at UCLA, Seattle Children’s, and Georgetown Hospitals. Her love of GI patients grew over time and eventually led her to working with Infusion patients full time. In her current role, she enjoys spending time with her infusion patients and taking a holistic approach to health and healing.
Grace and her husband live in Maryland and enjoy traveling and spending time with friends and family. She loves exploring new places and new restaurants in the DMV. They have an international non-profit, serving children and communities locally and in Central America.
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