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Connor's Story

Through Darkness I Shine: Connor's Story (Full Version)

Connor, 14, was born with a bilateral incomplete cleft lip and complete cleft palate involving the hard and soft palate. As a newborn, his condition was so severe that he was even unable to create the suction needed to feed. By the time he was 3 weeks old, he was failing to gain weight and was about to be admitted to a hospital. That’s when Connor’s family learned about Shriners Hospitals for Children — Chicago. He's had 13 surgeries and has more to go, but that hasn't stopped him from pursuing his passions. Meet National Patient Ambassador Connor and see his story.
View Transcript

Kelly:
I'm from Sycamore, Illinois, which is a small town about 60 miles west of Chicago. We're a rural farm community. My heritage goes back to Sycamore as long as we can trace it. So we are definitely [Sycamoreans 00:00:20] some would say. When Connor was born, he was my second child. I had a 3D ultrasound. From the profile it looked like he had this cute little nose. You could see features in his hands and fingers and all of that. So we were really thrilled and excited. And then upon delivery, that's kind of the moment when our world changed forever.

Peg:
I was privileged be in the delivery room with Kelly when Connor was born. And the doctor said, "Kelly, your baby has a little cleft."

Kelly:
I remember looking at my mom and saying, "What's a cleft?" And then they put him on my chest and then I looked at his face. I said, "There's nothing slight about that."

Connor:
Hi. I'm Connor. I'm a patient at Shriners Hospitals for Children Chicago and I was born with a bilateral cleft lip and palette. I'm 14 years old. I've been a patient there since I was a little kid. I've had 13 surgeries with many more to come and I love to play golf.

Kelly:
Connor is definitely a boy of many trades. He works on a farm.

Connor:
I work out on a property, a bigger property in acreage. I learned so many life skills, whether it's mowing the grass, operating equipment, chopping wood, starting a fire. I'm always constantly doing something and it's a huge part of my life for me.

Kelly:
We didn't know what to expect. The doctors at that point had never delivered a baby with a cleft lip or palate so they were not prepared either.

Peg:
The biggest challenge was keeping weight on Connor. He was not able to nurse because he did not have a pallet. He started losing weight within 24 hours.

Peg:
The nurses at our small hospital were not any help as far as helping Kelly to feed Connor.

Kelly:
Upon discharge, we started exploring other hospitals. We went to four different children's hospitals across the Midwest and didn't have a good feeling at any of them.

Connor:
Daryl Graves was who introduced Shriners to me and my mom.

Daryl Graves:
I made a phone call to her and I said, "Kelly, I want you to take a look at Shriners hospital. They have a lot to offer." So Kelly took it upon herself at that time to make a call to Shriners hospital.

Kelly:
Once we walked through the door at Shriners, it was just instant family. It's filled with other families, smiling and happy. You just felt at home.

Peg:
It was at Shriners that Mary O'Gara took Conner and said, "I'm going to show you how to feed Connor." And she did.

Mary O'Gara:
I've known Connor almost 14 years. He was an easygoing baby. I remember holding him and thinking what a beautiful baby boy he was.

Kelly:
And Mary walked us through step by step of the plan. She said, "Connor will have a team of 10 physicians and specialists. All doctors will review their plan with you." On top of that, to take away the financial concern was the most comforting thing that I could have as a mom. So in the first, I would say two years of his life, he had two major surgeries and a couple little minor things done.

Lee Alkureishi:
At Shriners Hospitals for Children in Chicago we take each child individually and tailor the treatment plan to make sure that we're giving them the best possible care at the best possible timing for that patient. Connor's undergone a number of surgeries starting with the repair of his lip at around three months of age. And then the repair of his palate just before one year of age. He's undergone repair of the cleft and the gum line. Taken some bone from his hip to do that. He's also had a couple of surgeries with me to place attraction hooks, which help to guide the development of his jaws to minimize the gap between his teeth. He's quite a ways through his reconstructive path, but he has a few surgeries ahead of him still.

Mary O'Gara:
Connor has always had very good speech patterns from the time he started talking. His speech was understandable, it was much like children his age. So I don't think he had to work quite so hard and long in therapy as most kids do. But that's our goal. Our goal is to get to normal speech like other children as soon as we can. And it was his surgical work that helped him do that.

Kelly:
Early on we were regulars and the list could go on and on to every person in that hospital that makes this the best place in the world to be.

Connor:
The team at Shriners is amazing. From Mary O'Gara to Dr. [inaudible 00:06:04], Dr. Patel, everybody. They've helped me become where I'm at today.

Connor:
They just make you feel like you are a movie star. They tell you, "You look amazing." They tell you, "Your smile is so beautiful today." And it's awesome.

Kelly:
It was about two months old. My mom and I were in the waiting room while Connor was in surgery. And we said, "What are we going to do to give back? How are we going to make the community aware of this amazing care for kids?" So in the waiting room, we came up with the idea to have a golf outing.

Connor:
It's a scramble golf tournament in which we raise money. Over the past 13 years we've raised just over a quarter million dollars.

Kelly:
More importantly, we've spread awareness. We've had over 10 families referred to the hospital. Shriners Hospital, they gave him the opportunity to attend the Shriners open golf tournament in Las Vegas. When we were in Las Vegas we were connected with his going to be, with confidence, lifelong mentor, Jonathan Snyder.

Connor:
He's my golf coach with Freedom Golf Association. They take wounded veterans, kids with any physical and mental disability, and then we take them in, we teach you how to play the game of golf and we make them the best golfer they can.

Jonathan Snyder:
I could tell he was an athlete right away. With some quick adjustments, he started hitting the ball really, really well. He was absolutely hooked on wanting to get better.

Kelly:
Connors experience with Jonathan never ended. They've kept in touch ever since he's been a part of that program. And he brings the skills from the adaptive golf that he learns back to other kids that are looking for help and leadership.

Jonathan Snyder:
He's a very resilient young man. He's a very hard worker, but what shines the most is his inspiration to want to help other kids and show other kids how they can overcome as well.

Connor:
I have challenges of my own. From making friends in school because I have a messed up lip. I kind of looked at that myself at sometimes at a young age and I was just upset. It was, "Why couldn't I be like every other kid? Why can't I make friends? Why can't I go to the playground and hang out with them without them talking about my lip?" It was challenging, it was tough. And as I grew older, I got thicker skin and I just kind of realized you just find a group of people that are there for you and don't look at you for whatever difference you have and they want you for the person you are and that's just the people you need to keep around in your life.

Connor:
I went through some stuff, but other kids go through so much more than me. So I always try to make kids from a young age feel like they are cooler than anybody else because of their difference and that's what makes them awesome. Just make it so that they felt like they were normal kids because they are normal kids in my eyes.

Denny Miller:
I have been the teacher of the adaptive program in Sycamore middle school for about the last three years. Connor's a very outgoing individual and I feel like Connor does a really good job empathizing with the kids in the class.

Jonathan Snyder:
He really inspires the other kids to know that they can be successful at something. It's a lot of hard work and he understands that. And he's one of the hardest working young man that I've come across at any one of our clinics. That just really shows how big of a heart he has.

Daryl Graves:
He's not doing this for attention. He's doing this to help out because he cares and he has that big heart that he wants to help people.

Mary O'Gara:
I think most people would say that he has so much zest for others and their needs. And that's what I see. I see him thinking of others first. And that's a wonderful thing to see in a young man.

Lee Alkureishi:
Going forward, he can do and be whatever he wants to be. When he sets his mind to something, he doesn't stop until it's accomplished. That's the type of attitude that tells me that he's going to become the person that he wants to be and he's going to get to do whatever he would like.

Jonathan Snyder:
I would say, keep your humble heart, keep working hard, and you'll accomplish all of your dreams.

Amanda Shae:
I have known Kelly since we were about 10, 11 years old. I am so blessed to be part of his story and that I get to watch it play out. He's going to do some really, really powerful things.

Peg:
Connor is one of the most precocious children I know. He has accepted this disability with grace, with calmness. He is incredible.

Connor:
My mom means the world to me. I mean, to many people say words can describe it, but there's nothing I can really say to thank or to tell how I feel about my mother. I mean, I love her.

Kelly:
Connor, I am beyond proud to be your mom. I feel lucky that I was chosen to be your sidekick. I hope you never lose your passion and love.

Connor:
I sit back and think about if I would have maybe just had 13 surgeries and not had Shriners hospitals to back me through it and make me who I am, I'd be nowhere where I was today. Shriners hospitals is an extension of my family. I have to give back. They did so much for me I have to do something for them. And I hope people think that I gave back. When they think of my name, I hope they think of Shriners and helping young kids.