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…
Sophie had her first annual colonoscopy/endoscopy on October 7th, 2022, a few weeks before her 9th birthday. In the recovery room, Sophie’s GI doctor, Dr. Enav, showed us her images. He went through the pictures and said, “This is normal, this is normal…this is Crohn’s Disease.” The devastation matched the relief to finally know.
We all took the news in stride, most of all Sophie. We went straight into “fix it mode” and haven’t looked back. The organic and unspoken mentality in our house was: “Why dwell on the negatives when we can invest our energy into the solutions.” Like most stories we’ve heard, Sophie started out on the medication that everyone, including Dr. Enav, nurse advocates and the experts at Children’s Hospital of Philadelphia (CHOP), knew wouldn’t work. Insurance wouldn’t pay for the medication everyone knew would work until she spent months taking what wouldn’t. She was taking 3 pills in the morning and 2 at night, all of which seemed impossibly larger for such a small girl. We tried crushing the biggest pills and taking them in apple sauce, but that turned out to be up there with some of her worst experiences with Crohn’s.
In December of 2022, after Dr. Enav relentlessly advocated for her, Sophie started her biweekly injections of a biologic and we started to see the benefits by the third injection. Sophie was never scared of needles, not even as a toddler. She doesn’t flinch at her regular blood work, IV’s or MRI’s. The injections didn’t worry her at all, even if having her parents administer her injections was a little worrisome for her. She was built for this…our Strong Sophie.
Sophie started playing sports at 3 years old and has been one of the best players on the field/court every season. To date, she has played soccer, lacrosse, softball, did swim team, and her two loves: basketball and football. When her Crohn’s symptoms were hitting her full force, Sophie had to come out of soccer practice and games, then again in the winter during basketball practice and games. Sophie was losing weight when her peers were gaining weight. Her little rocked up, muscular body was losing all its strength. She was a shell of her athletic self. From time to time, she would need to come off the field or court, on the verge of breaking down, and finally burst into tears when she made her way to her parent’s arms. She tried so hard to keep going and to hide the pain, but it was too much at times.
Once she was in a routine and had full dosages of her injections, she was back at it. She played softball and 3rd grade AAU basketball in the spring of 2023. She was one of the fastest and strongest girls out there again. She and her friend started their first, very own girls flag football team. They were able to get 10 girls together for the fall season in 2023, when she played flag football, soccer and started basketball season. Sophie made the 5th grade travel basketball team as a 4th grader in the winter.
Things are better now that Sophie is on the right medication for her at the moment. She has good days and bad days, good stretches and bad stretches. The love, care and support she has received from her immediate and extended family has been crucial and unwavering. The treatment and encouragement she has received from Dr. Enav and his practice and the input from CHOP has been amazing and comforting. The understanding and empathy from all her coaches and teachers has been empowering and reassuring. The energy, smiles and laughter she has received from her friends, cousins and, most of all, her brother, has been a wonderful distraction and helped her be a normal little girl. The love and support for Sophie is enough to bring her parents to tears. Thank you and we love you all!
