Ten Years Of Purpose

By Lexi Uslu

In celebration of TCAPP’s Ten Year Anniversary,  Lexi Uslu reflects on the early days and the formation of The Coalition Against Pediatric Pain.

I was there the day that TCAPP opened their bank account. At that time, they didn’t have an “official” name, so they called themselves the MACP’s (Mother’s Against Chronic Pain). There were many people involved and I got the honor of sitting by and watching this amazing organization grow.

MACP’s quickly grew beyond “mothers” fighting chronic pain, but with time, this small group of people began to include everyone fighting for kids in chronic pain.

As all things begin with small steps, what we know today as TCAPP began with yard sales and bake sales. I was only ten and TCAPP wasn’t official yet, but it was about to be…

I was there the day that TCAPP opened their bank account. Three of us: Sue Pinkham, my mother, and myself drove to the small federal credit union on a rainy, but sunshiny day. I was in a wheelchair, my mom still had mostly brown hair, and Sue’s hip hadn’t been fixed so she limped along into the credit union. There we stood; together, united, and most importantly… Ready for our mission. We sat in that office as a team. We were a team with the same common goal: to help children living in chronic pain.

The required amount to open an account was five dollars. I watched in silence as the big moment came… I watched Sue open her wallet and take that folded, soiled five-dollar bill out of it and slide it across the table into the teller’s

hands. There are not many moments in life where you feel like you are becoming an instrumental piece of something bigger. A moment that is so greatly important you forget everything else and just focus on every little breath that escapes you. My brain was in overdrive, and I can so vividly remember telling myself that I couldn’t miss a beat. In this moment, I knew that I was witnessing something that would forever change this world: the birth of an amazing organization. I was only ten, but I understood that TCAPP was going to be an organization that would give kids in chronic pain the resources that I never had. I knew that this five dollars would grow into something… Grow into a resource that would allow doctors to communicate, that would raise the awareness to ensure parents and families that they are not alone.

The year… It must have been 2011.

A year after opening that bank account, TCAPP became an official non- profit. Now, ten years later, the bank has grown and moved a couple blocks up the street across from the Stop and Shop. I have graduated high school, lived in Spain, and gotten married. But those aren’t the only things that have changed… TCAPP has changed too. In the past ten years, TCAPP has done game nights, has provided education to doctors through conferences and resources, has aided families going through the darkest of times, has sent kids to camp, has created zoom activities to

distract from the horrific reality that kids living in chronic pain face, and so much more…

To say I am thankful for having the opportunity of watching TCAPP grow would be an understatement. Watching TCAPP grow over the past ten years has been the greatest joy in my life.

TCAPP has asked me to start writing a blog for their website. I will always be ready to help TCAPP, but at first, I was skeptical towards their choice in me. I am now an adult, and my experiences are different than they were when I was a child. The thing about experiences though is they don’t go away with time. I thought about the blog and I came up with a way that I believe is the best way for me to contribute all I’ve got to the community of children living with chronic pain.

My blog is going to be different than your typical blog… And that is because it is going to include stories from my past and reflect upon how they have changed my future.

To all you kids out there, you’re not alone. To all you parents out there, you’re not alone.

To all the friends, and the family members… YOU ARE NOT ALONE.

All that I can do as a writer is hope that my words and my stories solidify this fact.