Madison Harbison. I’ll always remember the first time our paths crossed. I had just gotten off the stage after speaking at the Crohn’s and Colitis Foundation Patient Symposium Event in October. Her and her mom, Michelle, approached me outside of the auditorium. Tears in their eyes. Smiles on their faces. I immediately felt a connection and knew this little girl was something special.
Madison was only three years old when she started experiencing symptoms. Bloody diarrhea was the first indicator. After E.coli and C-diff were ruled out by doctors, this little girl underwent a colonoscopy. Imagine that. Three years old. Drinking the prep. Dealing with everything in the bathroom. And not being able to understand why this was happening or knowing what was wrong with you. Being a little girl, naïve to what it means to have a chronic disease that would be a part of her, for her entire life.
Imagine how overwhelming it felt for her parents. Michelle said it felt like they were torturing their daughter. Madison is now 12 years old. She’s had a total of three colonoscopies, an endoscopy and an MRE. She’s been hospitalized due to flare ups three times. She has three siblings at home, so as she’s in the hospital or going to the doctor, her parents have to care for them as well. There’s a reason for the saying—’it takes a village’… because it really does.
Madison has indeterminate colitis. Her inflammation is centered around her colon. She also battles arthritis that is secondary to her IBD. Just like me, Madison is on Humira injections. Her parents give her the shot—and each time she gets anxious and upset before and after. As a 34-year-old grown woman, I still react the same way at times. So, I can only begin to think what it would feel like for her. Aside from Humira, Madison takes Sulfasalazine, Imuran, Vitamin D, Iron and a multivitamin.
When it comes to advice for fellow parents, Michelle says, “Try to connect with other parents who are going through the same thing. There are “support groups” on Facebook that have helped me so much. Do not give up hope. I have every reason in the world to believe that Madison is going to accomplish everything that she sets out to. This disease is only one part of the amazing person that she is. It does not define her. Also, as a parent of a child with a chronic illness, we are their best advocate. No one knows your child better than you do. If you think that something isn’t quite right, trust your momma instincts!”
When you talk to Madison she radiates strength and resilience. You can see it in her eyes. She’s very mature and well spoken. She says IBD has made her a stronger person. “It’s made me more responsible in the sense of taking my medication, thinking about what foods affect me and always telling my mom if anything is wrong.”
As far as her Humira injection routine (let’s be honest, we all have one!)…her parents take the pen out of the fridge and let it warm up for a few hours, to lessen the sting. Madison likes to use Pinterest on her phone as a distraction. She wipes her leg with the alcohol swab and nods at either her mom or dad so they know to start. Right before the shot, she relaxes her leg, takes a deep breath and pretends she’s anywhere but the living room couch.
Each summer, Madison attends Camp Oasis. It’s a unique experience where kids with IBD have the chance to be on their own, to make decisions and to take responsibility, while being in a safe and compassionate environment. All the campers have IBD. “Camp has really showed me that I am not alone battling this disease. It is the coolest thing to be surrounded by other kids who know and understand what I have experienced.”
Madison doesn’t let her disease hold her down. She’s an avid soccer, basketball and volleyball player. She’s gearing up to take the stage in “Annie” and she excels at dance. This girl does it all.
Guess what she wants to be when she grows up? A Pediatric Gastroenterologist. Madison wants to help kids who are going through what she’s gone through.
I can without a doubt say, I know she’ll achieve this goal and follow her dream. She’s a true example of an IBD hero. Someone who hasn’t allowed her disease to rule her life. Someone who looks adversity in the face and says ‘not so fast.’ Someone who I admire and look up to, even though she’s more than 20 years younger than me. If you ever need inspiration—think about Madison during that next Humira shot, think about her when you’re taking that dreadful colonoscopy prep, think of her when you’re getting rolled down to that next CT scan. I know I will.