Take Steps Honorees understand first-hand how difficult — and empowering — it can be to live with Crohn’s disease or ulcerative colitis. 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 in support of the Foundation’s mission, and inspire hope in those living with IBD.
To nominate a Take Steps Honoree, please contact your local walk staff.
2023 Central Florida Youth Honoree
My name is Charleigh McMullen. I was diagnosed at the age of 9 with Crohn’s and Short Stature at St Josephs in Tampa. I started having stomach pains and vomiting around July of 2020.My Parents took me to Nemours for another opinion. After a colonoscopy and MRI, I was found to have strictures, which is the narrowing of the intestine. I was put on a liquid diet in Jan of 2021. In February the doctors decided the diet was not working because I was losing weight fast. They decided to put me on TPN which is nutrients through a PICC line.
On March 10, I was really sick, my arm was swollen, I could not walk and had a grayish look to my skin. I was rushed to Nemours in Orlando. When we arrived my blood pressure was high. I was admitted to PICU unit due to Septic Shock. I was incubated on March 12, 2021. I also had a blood clot in her heart, as well positive for HSV1. After removal of the PICC line I began to improve and was well enough to have surgery on March 22, 2021. During the surgery they removed part of my bowel. Also, during the surgery I received an ostomy and a distal jejunostomy. I began feedings through the distal jejunostomy. This ensured that I received my nutrients where I needed. It was weird, but it worked and after a long hospital stay, I was able to go home
After being home for 6 months I had a colonoscopy to determine if I was ready for a resection surgery. The great news was I was! In September I had surgery to reconnect my intestines. I have been on a regular diet ever since and been growing. I have tried many medicines to control my Crohn’s, I am on Stelara injections at this time every eight weeks. I have made many friends on my journey, and we talk and encourage each other by phone or chat. It’s nice to have people my age to talk to that understands.
My family and I would like to thank everyone for their support to help find a cure for Crohn’s and colitis. So many children go through so much and need relief. I would like to see more education for people so that they understand. Let’s help find a cure, people I love are waiting!
2023 Central Florida Adult Honored Hero
Nick Falcone, NDM Hospitality Services, LLC
My journey with Crohn’s Disease started when I was 11 years old. For months I was suffering with stomach pains, constant bathroom trips, blood in stool, and other symptoms. I was the same height I am today but wasn’t able to hold in food to where my weight dropped to 110 pounds – today I’m 180 pounds to put in perspective how ill I was. Doctors were struggling to diagnose what was wrong with me and I was losing hope that we would be able to figure out the issue. Finally, I was diagnosed with Crohn’s Disease and then came the potential solutions for battling this disease. As a young individual, I would say it didn’t really hit me regarding the lifelong impact that a disease like this would have on my day to day but what did hit me immediately was my parents’ reaction to the diagnosis. My parents were both upset and concerned for me and responded in very different ways. My Dad was in solution mode and was already looking into diet changes and medicines. My biggest concern was him telling me about how all of my favorite foods would be cut out of my diet and replaced with stuff that most young people wouldn’t want to eat. My Mom quickly made sure to let me know that we were going to ease into major changes but that changes would have to come. She was spot on as the coming years of my life until today have been altered completely based on having to structure my life routine around the disease.
Crohn’s impacts many aspects of life routine. The biggest thing that impacted my daily life and social routine was always needing to plan and be aware of where bathrooms are everywhere I went. The disease brings stomach pain and need to go to the bathroom so quickly that I always needed to be close to a bathroom at all times or worry about having an accident. As a young man, this is a very stressful situation when at school around your peers or when in public settings. There would be countless times where I would be out of the house with friends or family and spent the entire time in a bathroom. Another area that Crohn’s impacted in a major way was the frequency in needing to go to the bathroom. There would be days where I would be in the bathroom 30-40+ times. Crohn’s impacts your diet in a major way. I had to cut out of my diet over the years carbonation, alcohol, seeds, nuts, gluten, fried food, red meat, most fish/shellfish, and much more. You also have to get used to constant medical trips, tests, colonoscopies, blood drawing, and more. As a young child I felt like I was becoming a constant patient. I’ve tried dozens of different medicines which also come with their side effects and cause even more issues. These were just some of the challenges that occurred with the arrival of Crohn’s Disease but what was incredible was the positive impact that Crohn’s had on my life as well.
Crohn’s made me grow up extremely fast and taught me to deal with adversity at a very young age. Looking back, I’m very thankful for how this journey has brought perspective necessary in everything that I do today. I’m blessed to be a Husband to my amazing wife Jaclyn and a Father to our 4 beautiful children Nicholas Jr, Olivia, Bennett, and James. My wife Jaclyn has been pivotal with my Crohn’s journey helping me through tough times, coordinating and helping me with doctors’ appointments, helping with healthy cooking and eating, volunteering and supporting the cause, and so much more. 12+ years ago I started a business in the hospitality industry that started as one BurgerFi restaurant and has now blossomed to 7 BurgerFi’s, 4 other restaurants, 92 resorts through our Rentyl Resorts business, 5 apartment complexes through our management business, and 2 retail/entertainment districts with over 700 team members. We are extremely blessed and I believe that without my experience with Crohn’s Disease I wouldn’t be able to deal with a lot of the pressures that I go through today. I’m also honored to be a part of this incredible event as a host and a Honored Hero. My Mother became a huge advocate of the Foundation right away when I was diagnosed, and I grew up being extremely thankful to the organization while also looking for ways to support the cause.
2023 Central Florida Caregiver Honorees
Tom & Liz Gribben
The role of caregivers began in the fall of 2008. Our son was active and athletic, but when he didn’t make the high school soccer team after playing for eight or more years, we realized something was wrong. The diagnosis of a chronic illness left us struck and asking ourselves, “How do we help him navigate an illness we know nothing about?” and “What do we do next?” We had never heard of Crohn’s Disease nor the category of auto immune diseases labeled IBD. The pediatric years had it’s ups and down, but then came the transition to adulthood and the process of finding new doctors. How do we let go and let him find his own way when faced with new symptoms, new medications, stress of college, bills, and the overwhelming task of dealing with insurance companies? It’s easy to see how as parents, your relationship can be challenged, but for us, leaning on each other has and still is a way of strengthening our bond.
We have also been fortunate to lean on others as well. We were introduced to the support from others who are dealing with the same issues as our son, and caregivers early after his diagnosis. We heard an add for a Take Steps walk in downtown Orlando and decided to attend. We had no idea what to expect but being around all those people with similar situations showed how diverse and a bigger issue this was but mostly that we weren’t the only ones going through this. Through the Crohn’s and Colitis Foundation we have attended many Take Steps Walks, Camp Oasis youth camps, Team Challenge runs, Night of Hope fund raisers, informational seminars, sponsored support groups and most importantly, we have had the privilege of meeting so many wonderful people. Sharing their stories, offering support, or just making us laugh. We were extremely touched when asked to share our story as care givers. It’s often said that it’s all worth it if we can help just one person but from experience, we are sure that with your support, the Crohn’s and Colitis foundation will reach even more people!