NO ONE can prepare a parent to hear that their child has to live with a lifelong medical condition and that there is NO CURE.- Maria Lester

Maria has lived through this twice. The first time was when her oldest daughter was diagnosed with Type 1 Diabetes at 4-years-old. Then, nine years later her youngest was diagnosed with Crohn’s disease, Celiac disease, and Primary Sclerosing Cholangitis at 6-years-old. After each heartbreaking diagnosis, Maria remembers reassuring her children that everything would be OK. And in those moments, she found her purpose – she was going to do everything in her power to make sure it would be OK. She dove in headfirst, connecting with disease communities to get support and learn all she could about these diagnoses. She said yes to opportunities to partner - to contribute her time and talent to improve the lives of not only her children, but other families walking the same path she has walked. Through this she has learned a powerful lesson – “that when you find your purpose, you realize there is a cause bigger than yourself and shows you the strength you never thought you had.”

Below is Maria’s full #IGNITETALK from our Fall 2019 Community Conference. As you read her words, ask yourself: what is my purpose?

Good morning everyone. I'm humbled and grateful for the invitation today to connect with all of you. My name is Maria Lester. I'm the ImproveCareNow parent partner of Nemours Children's Hospital in Orlando, Florida and currently serve as the Communications Lead for the Parent Working Group.

November 10, 2004, my life changed forever. I became the parent of a child living with a chronic illness.

I sat in the pediatrician's office with my daughter Maiya, waiting on her lab results. Finally, the doctor walked in and delivered the news — Type 1 Juvenile Diabetes. Although I didn’t know much about this condition, I knew it was something severe as I looked at the doctor's reaction of utter concern. He then immediately instructed us to go to Nemours so that my Maiya could receive insulin that she desperately needed to prevent her from falling into a diabetic coma. As I tried making sense of the words I had just heard, I suddenly felt Maiya's little hand on my chin, and she turned my face towards hers. In her sweet little four-year-old voice, she asked, "Mommy, ok?" Hardly being able to speak, I took a deep breath, looked in her eyes, and told her everything was going to be OK, not knowing if that was true.

This day became the first day of the rest of my life caring for a child living with a chronic illness and the beginning of my journey to finding my purpose.

Let's stop and reflect for a moment and ask yourselves, what is your purpose in life?

What is it that gets you out of bed in the morning? What gives your life a sense of meaning and purpose? Is it your spouse, your children, your parents, your career, perhaps it's a combination of those? If you still haven't discovered what your purpose is, I can relate, neither did I until life struck it upon me like a bolt of lightning!

Maiya's diagnosis occurred right before a planned family vacation. We were scheduled to go to Hawaii in 5 months, and we had been planning this trip for one year. I said to my husband, "there is just no way we can go on this trip, it's too soon. I don't feel confident enough in our ability to manage Maiya's condition so far away from Nemours if a medical emergency should arise."

I expressed my concerns with our diabetes educator, Kristy. She looked at me in the eye, grabbed my hand, and said the most simple yet profound words that changed EVERYTHING… "You CAN do this, and I will help you."

With Nemours by our side and Kristy's support and detailed plan, off we went. Acknowledging the unknowns, we prepared ourselves for the worst and hoped and prayed for the best. The positive outcome of the well-prepared plan was evident, as I carefully combined the insulin-like a chemist in the back seat of the car. All while my husband drove upon a winding road, up and around a volcano. Somehow, I managed to give Maiya her shot. A sense of strength, empowerment, and gratitude came over me. It was at that moment; I knew Kristy, was right; we COULD do this. It WAS going to be OK, and we weren't going to let Type 1 Diabetes take over our lives.

I quickly became involved with the Juvenile Diabetes Research Foundation. I participated in fundraising walks, volunteered as a mentor, helped to raise awareness, and became an advocate for children and families living with type 1 juvenile diabetes. I made it a mission to learn every possible facet of what Maiya could potentially deal with. I immersed myself into the type 1 diabetes community, and through Maiya's, journey, I found my purpose. I felt strong.

Unfortunately, as we all know far too well in life, things don't always work out the way we would like. It's inevitable to avoid challenging and unexpected circumstances. They will happen.

Little did we know that on March 29, 2013, approximately nine years after Maiya's diagnosis, my husband and I would face yet another challenge. Now with our youngest daughter, Madison, who at the time was six years old. Madison had been experiencing bloating, fatigue, diarrhea, stomach cramping, and several other symptoms for a couple of days, and then one day, she started bleeding. When Madison saw the blood in the toilet, she frantically cried out for me. I ran into the bathroom, and I was shocked at what I saw…blood…lots of it. My heart sank. How could this be?

I immediately went into robot mode. I cleaned Madison, hugged her, and told her all was going to be ok, although I knew there was something wrong.

After weeks of medical exams, lab-work and procedures, the doctor walked in and delivered the news, Celiac disease, Crohn’s disease, and Primary Sclerosing Cholangitis.

I felt the room spinning. I became nauseous and could feel my heartbeat pounding through my chest. As I tried to compose myself in front of Madison, she looked straight at me and asked if she was going to be ok. Fighting back the tears I put my arms around her, and said, yes even though I didn't know if that would be true.

I don't even remember driving home. When we arrived, I ran to the bathroom, broke down, and cried. I felt devastated, hopeless, and so afraid. It was challenging to come to terms with the fact that now Madison would have to live with a chronic illness. And the thought of a potential liver transplant in her future was just too much to bear.

NO ONE can prepare a parent to hear that their child has to live with a lifelong medical condition and that there is NO CURE. It's beyond comprehension for a parent to reach the point of acceptance and avoid the thought of your child's mortality. With all of that said, I know NOW far too well from experience, that even in the darkest hours, we CAN still find significant meaning, hope and depth of spirit in our lives.

A year after Madison's diagnosis, she became the patient of a brilliant man by the name of Dr. James Franciosi, who is the chief gastroenterologist at Nemours Children's Hospital in Orlando. He was patient, thorough, friendly, and most especially willing to listen to my very LONG list of questions. He was precisely the kind of physician we needed.

It wasn't long after Madison became his patient that Dr. Franciosi informed me about ImproveCareNow and its mission and purpose. One day at Madison's appointments, Dr. Franciosi asked if I would be interested in partnering with the GI team, as the ICN parent partner. I didn't hesitate to respond and said, yes! And just like Kristy's words had been so profound in our journey with Maiya, Dr. Franciosi's offer was no different. It changed the course of Madison's journey and my family’s life, living with IBD.

ImproveCareNow has been a life-changing gift. From the moment I stepped foot into my very first ICN conference, I immediately felt a sense of community and belonging. I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life. It became clear I needed to dive into the ICN community and surround myself with people who understood.

When I joined ImproveCareNow, I was instantly blown away by the ongoing collaboration between the parents, patients, physicians, and the whole ICN community. It was an active community thriving on education, data, research, and support. I was especially impressed by the rapid rate of children reaching remission, including my daughter, Madison. ICN's outside of the box approach to improving the lives of children and adolescents living with IBD captured my attention.

For the last few years, I've had the privilege to be working alongside a great leader, Dr. Palomo, who is the medical director of the IBD program at Nemours, Orlando. Together we have had the opportunity to work on a few projects. One of which is an IBD book that serves as an essential guide and a valuable resource for families as they navigate through their IBD journey. It's also a perfect example of how we can successfully work together. With resources from the ICN exchange and by collaborating with Nemours Delaware and Nemours Jacksonville, the IBD book came to fruition and is distributed currently to IBD families.

I want to take a brief moment to acknowledge some people that deserve special recognition:

💚 Patient Advisory Council, you are real-life warriors! Thank you all for your contribution and for being an enormous source of inspiration to us all.

💙 Parent Working Group, you're the epitome of outstanding leadership. I am honored to be working alongside you. Thank you for all your hard work. To the new parents, I hope you know ICN is a community that is here to support you. You are not alone. Don't be afraid to ask questions, jump in, and get involved. You will not regret it.

💚 To the ICN staff and most especially, Chris Keck, Sarah Nocito, and Mary Havens, you are all superheroes! Thank you for all you do and for always being available to help.

💙 Dr. Colletti and Dr. Margolis, thank you for creating a network worthy of medical excellence. Thank you for providing a place of an ongoing collaboration, real-time experience, and a wealth of knowledge and opportunities for parents to connect. One cannot put a price on the privilege of working with such an incredible network. Because of your vision, hard work, and commitment to ICN, many families are doing well living with IBD.

💚 I would also like to say a special thank you to Madison's physician, Dr. Franciosi. Thank you for offering me the opportunity to be your parent partner and most especially, for significantly improving Madison's health and bringing back normalcy into our lives.

💙 To all clinicians, thank you for the tireless work that you do. I hope you know you provide far beyond just medical care but Hope and Empowerment to patients and families in the IBD community.

In closing, my purpose of community involvement, advocacy and caring for two children living with life-long chronic illness has taught me a powerful lesson. And that lesson is, that when you find your purpose, you realize there is a cause bigger than yourself and it shows you the strength you never thought you had. It provides you with the tenacity and determination you need to fight the challenges when you feel defeated. It gives back control of your life. I challenge you to find your purpose. Use it to help others who may be walking the same path.

Find your purpose, live your purpose.

I look forward to seeing all of you at the next conference in my hometown, Orlando. And as my daughter, Madison likes to say: Have a magical day!

Thank you!


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