Proceeds benefit Athletes vs. Crohn’s
Edward was diagnosed with severe Crohn’s disease on May 3, 2018. It was his 9th birthday and was a day that we will never forget. Despite being in the gastroenterologist’s office and being told about the prognosis, he cheerfully danced in the exam room at his “birthday minute” and later that evening declared that it was the best birthday ever. Although we didn’t realize it then, his attitude that day was only a small sample of the maturity and resilience that he would demonstrate over the coming months and year.
To list all of the challenges that he has been through thus far would be nearly impossible. Beginning with colonoscopies and monthly visits to the infusion center for IV medications, hospitalizations and ER visits, to a battery of daily oral medications and countless doctors appointments at Duke, Children’s Hospital of Philadelphia and with many local physicians. He’s battled diarrhea and nausea, vomiting and weight loss, anemia and fatigue. Somehow through all of this, he’s never complained. Never once said, “Why me?”
From before he could even walk, Edward loved balls. All of them. Over the years, baseball and basketball became his favorites. While he’s battled Crohn’s, his desire to play the sports that he loves has only grown stronger. At times because of the disease and at other times because of all of the medications, he’s not been able to play at 100%. Or even at 50% of full strength. But he’d always rather be playing than not in the game. Even at some of his most difficult moments, he insisted on being in the dugout with his teammates and loved cheering them on from the bench.
It took almost a year to get Edward to remission. During that time, he had to miss more than 6 months of 4th grade. We sat with his gastroenterologist discussing the options and his recommendation that Edward start home-bound instruction. He needed to get stronger, stop some of the immune suppressants that he was taking, and minimize the risk of infections. As parents and physicians sometimes do, the conversation about Edward hadn’t had much input from Edward himself. When I asked him if he understood and what he thought, he gave a slight shrug of his shoulder and told us all, “Well, as long as I’m still going to get a good education, then it will be fine.” He was still 9 years old and was showing a maturity and wisdom that kids shouldn’t need in elementary school.
Somewhere between doctors visits and bathroom breaks, we worked to revamp Edward’s diet, excluding nearly everything other than whole foods and including all of the anti-inflammatory ones. We researched toxins and infections, probiotics and essential oils, meditation and yoga. We also looked for stories of other people who had Inflammatory Bowel Disease. Inspirational people like JFK and Dwight Eisenhower. Athletes Edward would admire like Jake Diekman and Larry Nance, Jr. And that’s when we found Gut It Out and Athletes vs. Crohn’s and Colitis.
As Edward’s Crohn’s finally got to remission this past summer, he was still battling health issues that we cannot explain. Whether from the disease, the medications, or something totally unrelated, he’d developed eosinophilia. He spent another summer in and out of the hospital. From Immunology to Cardiology, Hematology/Oncology and more, he was again going through a battery of tests, blood draws, an echocardiogram and bone marrow biopsy. He’d developed an egg allergy, he needed an epi-pen, and he had changes in his labwork that immunology and hematology couldn’t quite explain. He also had an infection from a wasp sting that spread all the way up his arm and landed him in the hospital for multiple IV antibiotics for a week. And yet, he didn’t complain. Or mope or get down. He just took it one appointment, one more test, one other unexpected thing at a time. And he wondered aloud when he’d be back on the field, at the plate and swinging the bat.
The stories from Athletes vs. Crohn’s and Colitis have been inspiring to Edward and our entire family. For parents and siblings to see their child and brother struggling with this disease is not easy for anyone. To know that other people have been through it and are thriving is invaluable. For Edward, a road trip to Ohio to meet Larry Nance, Jr and his family was an opportunity that we couldn’t pass up. Larry and the entire Nance family were kind and encouraging. Talking with them and the other families in attendance was uplifting for us in a way that words cannot adequately describe. As Ted, Edward, and I drove home from OH, Edward decided that he wanted to do more. To share his story to raise awareness for IBD. To raise money for research. To help other people that are going through the challenges that he knows all too well.
That’s where this fundraiser comes into the story. Edward has big plans and we are so proud of his dedication and commitment to this idea. The number of people who have told us of their IDB diagnosis since hearing about Edward is unbelievable. There needs to be more awareness of these conditions and less stigma surrounding the symptoms that accompany it. For there to be more funding for research, medications, and eventually a cure, there needs to be more knowledge of the disease and how many people and families are impacted by it.
Edward has arranged for local events at Orange Theory Fitness Williamsburg and Moe’s on Monticello Avenue on Friday 11/29/2019. Yes, that’s Black Friday and our family is beyond excited to kick off the holiday season raising money for this great cause! There will be a class at OTF to raise funds for Athletes vs. Crohn’s and Moe’s will be donating a portion of the day’s sales to AVC as well. Edward will be at OTF and selling raffle tickets for lots of fun prizes. He’d love to see some familiar faces in the class at 12:00 or later at Moe’s for lunch. Please join us for a workout or a burrito! Or just swing by to say hi, chat with our family, and give Edward a high-five!
Over the past year and a half, our world was turned upside down. To see your child struggling like we have and to feel helpless to fix it, is indescribable. Edward, Hannah, Grace, Ted, and I are forever grateful for the support and prayers from our family, friends, neighbors, colleagues, and teachers that have helped us through these challenges. We appreciate you all so very much!
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