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.
Mia:
Hi. My name is Mia. I'm 16 years old and I'm your new national patient ambassador this year. I live in Edwardsville, Illinois. I have my mom and my dad, my brother, Evan.
Andy:
When Mia was born, she was the most aware little baby I'd ever seen.
Amy:
She was an easy baby. Beautiful, bright blue eyes that just kept staring at us. Smiled at us numerous times while we were holding her and it was lovely.
Evan:
She is a very smart individual. She always seems to know how to deal with a situation, considering the background and what she's been through.
Amy:
I would say it's probably three to four months in of her young life and holding her on the couch and feeding her and letting her sleep on me. I'm noticing that I'm feeling a shape that's not straight up and down on her spine. Very concerned and I knew in my mind that it wasn't right. There was definitely something going on. So I went for her four-month pediatric visit and brought the subject up to her physician at that time.
Andy:
The pediatrician kind of dismissed it initially. In follow-up visits though, I think it became apparent that there was something wrong.
Amy:
She had her first x-ray, which confirmed her curvature. So she was actually fitted for her brace at 18 months and started wearing one at that point through children's hospital.
Andy:
We tried the clam shell braces and those kinds of things and nothing seemed to help. It just seemed to be getting worse and worse. It was apparent that we were going to have to take a more drastic approach to helping her because her heart and her lungs were not developing appropriately. We initially got a lot of pushback from our insurance because they called these sorts of things cosmetic in nature. We fought with them for a little while, but then we ended up being referred to Shriners. The best referral that could have happened obviously.
Michael Kelly:
Mia is a perfect example of what the Shriners can provide. She had a very large curve as a young child, which if it had gone untreated would have resulted in a very different story today. As a child grows from probably three or four years old to 10 years old, we try not to fuse their spine and we try to just lengthen their spine. So Mia ran the gamut of spine interventions for her scoliosis from bracing to a growing construct to her definitive fusion.
Michael Kelly:
Halo traction allows us to get almost free curve correction. That if you take someone to the operating room, you can only get so much straightening of their spine at one time in a safe manner. Putting a child in a halo, it helps you achieve a safer, greater correction than if you were to try and do it all in one go in the operating room.
Mia:
I lived in the hospital for a couple months with my halo. And I just remember having so much fun. Sometimes you remember the bad points, but I mostly remember all the good times. It was such a fun summer when it normally wouldn't be, but it was really fun actually.
Amy:
So that was the start of my journey and Mia's journey and our life with Shriners hospital, which has been nothing but a blessing since then.
Mia:
During those years, it was about 17 surgeries total. And I was probably 12 or 13. I had my last surgery and I had my fusion. So I'm all done with surgeries. The people at Shriners are amazing. Every single nurse or doctor I've encountered is a really good person and it's just a really kind environment. Surgery was always actually an enjoyable experience. I loved going to the hospital and getting ready to go in surgery because I got to talk to all my caregivers and especially Joetta. She's like a grandmother to me. She's been there for as long as I can remember.
Joetta Worton:
Mia was a little bitty thing when we first saw her and I've watched her grow through the years into a beautiful young lady. She and Amy and I hit it off from day one.
Amy:
I was getting the best surgeon I could possibly get for my daughter. It's a feeling that swells your heart and overwhelms you.
Mia:
Kids can be interesting in school, middle school, especially. You start in locker rooms and everything and you get some stares when you have a big back scar and some questions. You kind of get used to it and I almost think of a scar as like a souvenir. I've been on a really long journey and I couldn't just buy it. It's really interesting that a scar on your body could tell so many different stories.
Amy:
She started to love music and singing probably by age four. By third grade she had her first singing teacher and was getting singing lessons because she just loved it so much because she could express herself through music.
Mia:
And when I came to middle school and sixth grade, I noticed they had musicals. So I decided to try out.
Hailey Patteron:
She came and auditioned for one of our productions for the theater company we run. And ever since, we've been hooked on her.
Mia:
I've done probably about 10 big shows. And you make just a lot of really, really beautiful memories.
Terry Patterson:
We have a not-for-profit arts group called Arts for Life and they give out performance awards. So up against about 1500 performers and she won for best outstanding youth performer. First time out of the gate.
Hailey Patteron:
Yeah.
Andy:
I remember seeing her on stage for the first time in a performance. I always knew that she could sing, but when I saw her on stage and she became that role that she was playing, I was really taken aback. I had no idea that she was that talented. Whatever that it is, she definitely has it.
Emily Ottwein:
The most amazing thing about Mia is that she puts her whole self into her artistry. And for someone so young to have all of that and the ability to make us as audience members feel an emotional connection with what she's portraying is really something extraordinary and phenomenal.
Ashley Melton:
Mia has a presence on stage. So we call that X factor and it's always hard to identify and always hard to find. But when you see someone on stage that has that X factor, you're pulled to the edge of your seat. Talent gets you into the room, but the resilience and the perseverance that you have as your work ethic is what will take you further. And that's really something that I see in Mia every day.
Mia:
I filmed a lot of commercials in the past with Shriners. It's really awesome to be able to put my performing into raising awareness as well, but it reaches so many people and it's brought in a lot of money for us. It just makes me feel really good to know that I have helped in some way.
Amy:
It's her hospital, it's another home to her, it's her family and she gets to express that, she gets to share that through the TV and it gets to reach everyone nationwide. That's one of her favorite things because it reaches so many people.
Mia:
I was at the hospital and Kelly Hanson, the lead singer of Foreigner came to visit all of us. And I actually became quite close with him. 10 years later, I was actually sent out to Tampa to film the I want to know what love is PSA and I got to see Kelly again. He came up to me and he was like, "I remember you. I met you 10 years ago." And it's so crazy that a celebrity who meets so many people would remember a little kid he played air hockey with. It was awesome.
Mia:
This is definitely unexpected. I thought my medical story would just be scoliosis and I'd be done.
Amy:
Last fall, my husband and myself, we noticed that she had a nodule on her neck.
Mia:
And we thought it would just be hypothyroidism because that's what my mom had.
Amy:
She had lab work done and so when we got to the endocrinologist, she said, "Yes. Your thyroid labs are elevated. Your ultrasound shows that you have tumors in there. You need more testing done. Some of them are large enough that say that you need to go see a surgeon."
Mia:
And when they tested it and checked it, it was true that I did have thyroid cancer.
Andy:
Getting that call was probably one of the worst things a parent could ever imagine. The first reaction everybody had was, "You got to be kidding me. What like some kind of a cruel joke or something?"
Amy:
I can't believe this. This kid's been through enough. We've already had 17 surgeries on her back.
Mia:
I have to do a few more treatments, but that's okay. I mean, that's life. It's definitely taught me I'm not invincible. I always had this mindset that I've been through such a long story that I don't need to go through anything else, but I know that happened for a reason. It's taught me a lot and I've taken a lot of emotions out of it that I hope to use in the future.
Andy:
She's had to fight a lot in her life. She's never been the kind of kid that gave up and said, "Oh, well." She's got this. She's not going to let anything beat her. And at the other end of it, she's going to be even stronger for it.
Joetta Worton:
We're not given more than we can handle. Sometimes you think you are at the moment, but she's handled it all. I think Shriners helped her gain some of that strength through all that she went through as a patient here. I'm very proud of her and the way she handles situations. She just takes them like a champ.
Mia:
Shriners is just such a helpful environment. It's become another home to me and I don't think I could ever say that about a hospital or really any other place.
Amy:
You weren't walking into such a large hospital that you felt like you were another number or felt like you were just a patient, but you felt like you were becoming part of something bigger than yourself.
Andy:
They did their best to make sure you felt like you were part of a family. And that meant a lot.
Evan:
I have a lot of appreciation for those people. They come in day in, day out and help out the kids who need it the most and always give a level of care that exceeds any expectation of any parent. Through Shriners They helped my sister establish a life that is much better than it would have been.
Michael Kelly:
I'm proud of her. It's amazing because she has been put through a ringer and she has taken every lick that has brought and makes her stronger and I think that the grit that she has shown through this is really what makes her special.
Ashley Melton:
I think what's inspiring is just the ability to get back up and keep going and push for your dreams still.
Hailey Patteron:
She has it and if she keeps going, she'll go far.
Emily Ottwein:
To be a part of helping somebody else find their dreams is an incredible privilege and I'm so honored that I get to be a part of her dream.
Evan:
And I look up to her and I want to be as tough as she is and talented as she is. I work to achieve that same level of success that she has.
Andy:
Mia's probably the strongest person I know. From the moment she was born she had a spark about her. No matter what she's dealing with, no matter what kind of problems that she has or things that she's going through, her heart always goes out to other people. I would say she's made me a better person.
Amy:
More than words can express, I love her with all my heart. She's just a wonderful person. She's so intelligent, she's a good student, and she's one of my best friends and I just love her to pieces. Just absolutely love her.
Mia:
I want to be known as the girl who overcame everything. And being able to use my talent for some good. I want people to think, "Wow. Anybody can do it then." I don't think I'd be as happy of a person if I wasn't with Shriners. It's a huge part of my life and without it, I think I'd probably be a little bit lost. So I guess I would just want to inspire more people to follow their dreams because I feel like the world would be a happier place if people were doing what they loved.
