Pediatric Crohn’s: Seeing the world through Penny’s eyes

Meet Penny. Penny is your typical sassy, feisty and vibrant four-year-old. Behind that big smile and those glittering eyes filled with mischief is so much more. She’s a little girl, fighting a big disease. IMG_3407A disease that flipped her young life upside down. A disease that she will battle for the rest of her life. Penny was diagnosed with Crohn’s in January 2017.

Penny’s mom Beth came across my blog and reached out. Reading the desperation and fear in her words, but also the appreciation for my patient advocacy brought tears to my eyes. I felt an immediate connection with this family and specifically this little girl.

It all started this past November when Penny had blood in her stool. At first, her parents and doctors thought it was merely constipation. Something common, that many children go through. On Thanksgiving Day, that all changed. Penny was at the Detroit Lions football game with her parents, a family tradition. When Beth took Penny to the bathroom the entire toilet was filled with blood. As you can imagine, it was horrifying to see. IMG_3405After several tests, Penny was referred to the Pediatric Gastroenterology department at University of Michigan-Mott Children’s Hospital in hopes of finding answers.

On January 11, 2017 Penny went in for an upper and lower scope. As soon as it was over, Beth and her husband were called in to meet with the medical team and were told that Penny had Crohn’s Disease. Let’s pause for a second. Imagine being told your four-year-old daughter, who was perfectly healthy up to this point, had a chronic disease, with no cure.

Beth says, “When we were initially given the diagnosis, I was numb.  And this wave of “mama bear” protection came over me. I went through the motions of gathering as much information as I could so that I could do everything I could to help her. After the initial shock passed, my heart broke and I also became angry.  I hate that she has to go through this and especially at such a young age. I cry…a lot. I am trying very hard to let go of the anger but it is really hard not to be angry at the world when your baby is handed such a huge, life-altering diagnosis.”

Since being diagnosed in January, Penny has spent more than four weeks in the hospital. IMG_3399She’s underwent MRIs, ultrasounds, countless blood draws, two Remicade infusions which were believed to induce heart failure, time in the cardiac ICU, two different PIC lines, a blood clot, an NG tube, physical and occupational therapy… you name it, Penny has endured it.

“This diagnosis has changed all of our lives.  Our lives have been consumed by it.  It makes my heart ache to think that there is no cure and that she will forever live with this.  She is four.  She has a lot of life left to live and a long time to live with Crohn’s.  The only positive thing is that she will not remember life without it and will know how to live life with it. She will learn early on how to take care of herself and also how to be her own best advocate.”

When Penny gets her infusions she’s happy as a clam once the IV and blood draw are behind her (can’t blame her!). penny2She spends the rest of the time playing, watching movies and eating snacks. Penny has taken all the challenges in stride and hasn’t allowed the difficult days to take away from her happiness and magnetic charm.

Beth says her daughter inspires her every single day, “She inspires me to be more courageous. She inspires me to do hard things!  I find myself often saying, “If Penny can do it, I can do it.”  She inspires me to find happiness in my day.  Throughout the entire hospital stay, even on her hardest days, Penny would find something to laugh or smile about.”

Beth and Penny are an inspiration to the inflammatory bowel disease (IBD) community. In just 10 months they have sponsored “Kid Care Bags” for kids in the infusion center, sold “Penny Power” t-shirts and donated the money to the Crohn’s and Colitis Foundation and participated in the Take Steps Walk in Detroit. IMG_3406Beth and her husband teach at a local high school and this fall the volleyball team is doing a Crohn’s Awareness game. This family is doing everything they can to help and advocate for others. Penny is learning and witnessing at a young age that just because you have a chronic illness, doesn’t mean you can’t lead a full and beautiful life.

When it comes to advice for parents with children who are battling IBD, Beth says you must learn everything you can and be your child’s number one advocate. Connect with parents and adults living with IBD, as they will be your greatest resources and provide hope and perspective. Most importantly, help your child learn about IBD and what is going on in their body. Why the doctors are checking them, why they are in the hospital, why they are in pain and why they need daily medication.

Penny is currently doing Vedolizumab (Entyvio) infusions. On a daily basis she takes Imuran and Vitamin D. She recently stopped taking Iron, Uceris and two antibiotics to help her fight infections she picked up earlier this summer. She also takes three medications for her heart: Coreg, Aldactone and Enalapril.

Like the rest of us, Beth hopes and prays for a cure someday, “My prayer every day is that my girl will see a cure in her lifetime.  IMG_3403But until they find that, my hope is that every patient finds the best way to manage his/her symptoms and learns to become an advocate for themselves.  I hope kids are able to manage their symptoms so they can just be kids who take medication and that IBD doesn’t consume their days.”

As a soon to be 34-year-old, who’s battled Crohn’s since I was 21, I have a few words for Penny and her amazing family and support system. While the journey won’t always be easy and your patience and strength will be tested time and time again, you will always rise above. Each flare up and tough moment is a setback, but this disease does not define who you are. You are not “Penny with Crohn’s disease.” You are so much more. You are a girl with a promising future, who can achieve and accomplish anything you put your mind to. In these past 10 months since diagnosis you’ve already grown and learned more than you realize. By the time you grow up you will be so strong and have a perspective that your peers will admire. So, keep being you. Don’t let this hold you back. And know that even though you may be small in stature, you have the ability to make a big difference in the lives of others. I know I already look up to you.

Click here for information on IBD. Research the best Pediatric Gastroenterology hospitals. And know that you are not alone in your worries, concerns and struggles.

 

 

 

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