Our Philanthropy

A Purpose-driven Fraternity – Membership with a Meaningful Impact

The fraternity established Shriners Children's as its official philanthropy in 1922 and continues to support it today. It is now one of the largest pediatric sub-specialty healthcare systems in the world, with locations in the United States, Canada and Mexico. In addition, the healthcare system holds hundreds of outreach clinics annually, with medical staff members routinely traveling to places around the world to provide pediatric medical care. The staff of Shriners Children’s is dedicated to improving the lives of children by providing pediatric specialty care, conducting innovative research and offering outstanding educational programs for medical professionals.

More Than Just a Membership

Our members support Shriners Children's in many ways including through a portion of their dues, acting as voting delegates and as volunteers. The Shriners’ pride in and commitment to their philanthropy runs deep and is apparent in all they do.

An exclusive benefit as a Shriner is the opportunity to serve in several meaningful and mission-critical roles in support of Shriners Children's. Shriners are elected by the fraternity’s membership to strategically guide the healthcare system’s direction through serving on Shriners Children’s Board of Directors, Board of Trustees and at a local level, as officers on each facility's Board of Governors.

Members have other unique volunteer opportunities and are frequently seen throughout the grounds of our hospitals and outpatient facilities and at events, generously donating their time in a multitude of ways, including serving as tour guides, entertaining patients, and transporting patients to the hospitals and clinics. Our members and their families also engage in significant fundraising efforts, hosting a variety of events including golf tournaments, football games, motorcycle rides, fishing tournaments, dinner parties and dances.

Thanks to the determination, dedication and hard work of millions of Shriners and supporters over the years, the two organizations have left a lasting impact on humanity. Since opening the first Shriners Children’s location, the healthcare system has improved the lives of more than 1.4 million children. And with the help of new generations who share this passion for helping others, the organizations will continue making a difference for decades to come.

Meet National Patient Ambassadors Sydney, Seth, Mia and Connor

Reaching New Heights: Sydney's Story

Sydney learned she had scoliosis when she was 10. Her treatment began with bracing, but despite a strict exercise regimen and wearing her brace 23 hours a day for 1½ years, her curvature progressed. Searching for an alternative to spinal fusion surgery, Sydney and her family learned about the Vertebral Body Tethering (VBT) treatment option. Now 16, Sydney loves playing the oboe and saxophone in the school band, and enjoys painting and swimming. Meet Sydney and learn more about her journey with scoliosis and care at Shriners Hospitals for Children.
View Transcript

Sydney:

Hey, guys.

Speaker 2:

Hey.

Sydney:

Hi.

Speaker 2:

How's it going?

Sydney:

Good, how are you?

Speaker 2:

Are you ready?

Sydney:

I am.

I would say one of the hardest things I've had to go through is ...

Melissa:

Sydney is very, very type A. She's just like her dad and her grandmother, always trying to be a perfectionist in everything she does. She's also fun and she's a very tender-hearted kid.

Dusty:

Sydney in three words, emotional, strong, and I'm going to say fun-loving. It's kind of a hyphenated word, but fun-loving for sure.

Evan:

I would say that Sydney is confident, she's strong. She is one of the best sisters that anybody could have and she has the greatest personality in the world.

Darian:

Yes, Sydney is the sweetest girl you'll ever meet. She takes a lot of things to heart and she really is caring, but she also has a fun personality that makes her just like a little sunshine to be around.

Melissa:

We've lived in Oklahoma City for 18 years now. We graduated from college and moved to Oklahoma City to start our careers. When I found out that I was pregnant with Sydney, Dusty and I, we were so excited. We had a 10-year-old daughter already, she was the only child for a long time.

Then we went to the doctor and she said, "Your blood pressure is a little too high. I think you're going to have this baby." We were like, "Uh, this is almost a month early, three and a half weeks early," and she said, "It's fine." We went in and to the hospital and Sydney was born on July 1st. She was five pounds, four ounces when she was born. They whisked her away, as soon as I had her, they whisked her away. I didn't know what was going on.

She ended up in the NICU for a little over a week. She stayed there and she was jaundiced. When she actually came home, she was four pounds, 11 ounces. She had all the milestones as any other child would, so she grew up just fine.

Dusty:

She was kind of a daddy's girl. Her and I would do stuff together, liked to play.

Melissa:

At her ten-year-old checkup is when we found out that she had scoliosis. Our pediatrician noticed a slight curvature in her spine. He did the bend test, it was 18 degrees. Then by the time we went back six months later to the local children's hospital, we did the wait and see thing, it was 32 degrees. They said that she needs to be braced to that day. That was the first time that we heard about bracing.

Dusty:

I was somewhat familiar, obviously, with scoliosis, because my mother had had scoliosis. Now, she'd had it as a child almost at the same age as Sydney was diagnosed with it. I think being able to share those experiences with Sydney helped. I could tell her that, "Hey, my mom had to do this when she was younger too, and had to go through this experience."

Melissa:

We started looking at other alternatives. We went to Wisconsin to a specialty clinic up there, we went to a yoga master that actually he was trained in India, because at that time it had progressed to 43 degrees and Sydney felt defeated. She cried and it was the first time that she's cried about her scoliosis. It makes me cry even when I think about it because she worked so hard at it. She wore that brace 23 hours a day for two years and never complained. Dusty and I knew that we needed to do something different because we did not really want our daughter at 12 years old to have fusion, and she was looking like she was going to have to have it.

Dusty:

My wife was really the one that started doing a lot of the research, looking on Facebook and trying to find a support group, and she found a group for VBT. I'd never even heard of it before.

Melissa:

I got on there and I just put Sydney story in, like, "This is her age, this is what her curve is." A guy named Kyle, from Oklahoma, he messaged me. He said, "At Shriners you don't have to worry about anything. You just need to go. Local Shriners will help you get there."

I had read that this vertebral body tethering was not FDA approved and so I just tried to research as best that I can. Within a few days I had the x-rays and I had them mailed to Shriners and Dr. Hwang said, "We'd like to see you in person," and so we scheduled our trip to Shriners.

Sydney:

I remember the first time I went to Shriners in Philadelphia. I was nervous, but they just looked at me and just immediately started to care about me and who I was personally, on a personal level that you don't see in very many places.

Dusty:

Dr. Hwang was fantastic. I mean, he answered all my questions, really gave me a sense that the doctor's and the team there, it's not really just the doctors, it's the nursing staff, it's the whole team, everybody, they really know what they're doing, they really take care of the patient. Then there was also a sense that it wasn't just like we were going to go there and be a patient of Shiners for the time of the surgery and then afterwards we go home and we're left on our own. I really got a sense that Sydney would continue to be under the care Shiners for a long period of time and that they were going to continue to monitor her care and her wellbeing over her lifetime.

Melissa:

Dr. Hwang said she was a candidate. He said, "You can do it or not, it's up to you. She can continue bracing, but she's a perfect candidate at this time." We went ahead and did the preliminary test that they wanted. Shriners was leading the charge. We knew they were the best of the best. We weren't as concerned about the FDA approval, but we knew that they were leading the charge and that they had done several of these and we had seen results from other kids.

Steven W. Hwang:

Essentially, with scoliosis, it's basically a curvature of the spine. You have a rotation component. What we see on the x-rays and what families often see is this curve on the x-ray of the spine. Ultimately, we want to straighten the spine so it doesn't get worse and then provide the best correction we can to children. With the VBT, the vertebral body tether, the theory is that you can actually correct the scoliosis and use their growth to help improve the correction. What we tend to do is, through the chest cavity, we make smaller incisions and put a screw into the vertebral body, which is the bigger part of the spine, and put an anchor that tethers kind of a rope that has a little bit of tension on it. That allows us to apply a force on one side of the spine, so we compress one side and then the other side can differentially grow. It slows down growth a little bit on one side, allowing the child's growth to help correct the curve over time as well.

Ideally, hypothetically, we think that'll preserve motion, hopefully distribute the stress of the spine so not any single level has more stress, and maybe long-term avoid more issues with degeneration and pain. With the scoliosis, say, for example, with the curvature of the spine, it affects the pulmonary function and in severe cases can affect other organ structures, and so really we want to maintain as straight a spine as we can and allow for growth and respiratory and lung development. It's a unique environment. I think for the VBT, that's a perfect example where there's very few places that you would ever be able to develop this and pioneer this technology and advance it the way that Dr. [inaudible 00:08:44] and the group here did. Here, really their focus was on the children, that partnership, and that's the way this whole technology came about. It was pretty amazing.

Dusty:

We were in the prep room with Sydney. It's a surreal moment. We held Sydney's hand, I think we were all being brave for each other, and then they wheel her off and closed the doors. I think my wife and I, it was just an emotional release.

Sydney hasn't worn a brace since that. She's able to do everything physically that she wants to do. She had a very good experience with her surgery, there were no complications or no issues. Her recovery was way better than what I was expecting, in terms of her speed of recovery. I think a lot of that is due in part to the surgery itself. I mean, the procedure that the doctors have come up with for this vertebral body tethering is really incredible.

Sydney:

When you play oboe, you have to use a lot of air. It is such a tiny instrument, but each note is so different and it sounds completely different. You have to use all your lungs, all the air in your lungs.

Melissa:

She had her surgery in February and she went back to school six weeks later, but she was playing her oboe, practicing, within three to four weeks. She even came to me and she was like, "I can breathe." She didn't notice that she couldn't breathe fully. Now, she can breathe fully.

Dusty:

I love that my kids are in music now. Evan plays guitar, and he's also in percussion in seventh grade in the band. Sydney, of course, is in the band and she plays oboe and the saxophone. We've got a lot of musical influence our family.

Mr. Mewhorter:

She is a fabulous oboe player, but not only that, she has to double on a marching band instrument as well in the fall, on saxophone. She actually doubles in the fall semester when we run around the field. She's a fabulous both a player, human being for that matter, and just a really talented musician.

Mr. Clifton:

She's an incredible role model. She works with other kids very well, like you asked a while ago. It would be nice to have 50 of her. I would be very happy with 50 of Sydneys. That would be awesome, it really would. She's an awesome child.

Sydney:

Band is my favorite subject because it's something that I get to do with my friends and I get to involve my family in. I learned how to be more outgoing and to problem solve. I know it sounds weird to say that about band, but band really is every subject in one. My brother and my dad, they love to play drums and guitar together. I'll go in there sometimes my saxophone and just play whatever I feel like is fitting. It's really cool because afterwards, after you're done playing, you're just like, "That was cool," that we were all able to come together and to make music. Again, it's really special to me, just because of the emotion behind it and how meaningful it is for people.

Quinton Rav:

When I think of Sydney, I would describe her as compassionate. She is a natural leader and I see that play out in the youth group.

Sydney:

During my surgery, my church group was so supportive. My pastor, he would come to me and he was like, "If there's anything that I can do for you, just let me know." I felt like I could really open up to him and tell him my fears and worries.

Melissa:

I wanted to shout to the world about the care that we received at Shriners, so we found Curvy Girls and we support over 30 members now, we have over 30 members in our group. We run two groups, one in Tulsa and one in Oklahoma City.

Sydney:

My support group has helped me as a person in so many incredible ways. I am a lot more confident in myself and I've learned how to be a good listener. I have a best friend, her name is Katie. She actually lives right across the street from me, we've been best friends since second grade. Over the years, it's gotten to be a very, very strong friendship.

Katie:

I would definitely say she's an inspiration to me because she's had to deal with so much in her life, of just all the struggles of getting through scoliosis, and throughout the whole experience she's been positive, she's been looking forward and she's had a good attitude about everything.

Darian:

She'd be a great national patient ambassador, because like I said, she is very giving, very kind, she cares about others. She wears her heart on her sleeve, she's very emotional. You can see just how willing to help others that she is.

Evan:

I'll call her the best sister of all time, just because she's just been there for me. She helped me out in situations I didn't know how to get out of, she helped me with school work, she's just always been there for me.

Melissa:

She surprises me a lot, Sydney does, how kind she is to other people. When kids are teenagers, they're not always so kind, but Sydney, she takes that person in. Then the support that she gives to the girls in the scoliosis group, I mean, she does that outside of just the one time we meet a month.

Dusty:

I'm proud of her in a lot of different ways. I'm proud of her because she's strong. I can see that she's a lot stronger than she thinks she is sometimes, but she does push herself. She has incredible work ethic, and I see that in how she does her schoolwork.

Sydney:

The hardest that I had to go through mentally was scoliosis. Again, it was hard because I just felt so alone and confused. Obviously, you're like, "Why does this happen? How did this even happen? Did I do something wrong?" I put a lot of guilt on myself. I was disappointed in myself, I felt like I didn't do enough. Going through that disappointment and learning that none of that was my fault and I did my best, working through that was probably the most difficult part of my journey.

I think Shriners Hospital care is unique because I just don't think they realize what an impact they've made on my life. They've given me the opportunity to move on from my journey. All the things I've learned and all the hardships, I can take that now and help someone else. I get the opportunity to say, "Okay, that chapter in my life is done. What can I do now to help others that are going through the same thing that I went through?" I know how lonely that was and so I never want anyone to feel that way.

I'm so thankful that I have scoliosis, because my family is closer than ever and I have amazing friends that are always there to support me. When I get older, I want people to know me as someone who always looked on the positive side and was always there to put a smile on someone's face, no matter how I felt or how bad my day was and just not letting that reflect on other people, just letting them know that everything's going to be okay and there's always a positive outcome of something, even if it's hard.

(silence).

Reaching New Heights: Seth's Story

Seth was 11 when his doctor noticed a curvature in his spine. They began with a “wait and see” approach, and later treatment from a chiropractor. Still, the curvature of his spine quickly progressed to a severe degree. He and his family learned about Shriners Hospitals for Children from a social media group focused on the Vertebral Body Tethering (VBT) treatment for scoliosis. Seth, now 17, enjoys playing many sports, including football, baseball and basketball, and is now focusing on competitive golf. Meet Seth and learn more about his scoliosis journey and care at Shriners Hospitals for Children.
View Transcript

Seth:

Hey guys. Ready.

Speaker 2:

Let's roll.

Seth:

It was really scary to me. I was thinking ...

Don:

My wife, Vicki, and I have three boys, Jacob, who's 26, Nathan, who is 25, and Seth is 17. If I had to describe Seth in three words, I think he's thoughtful, I think he's funny, and he's awesome.

Vicki:

He's unique in that he's a very hard worker, he's very driven, he's very fun to be with.

Nathan:

Seth, in my eyes, is a very humble individual. He has a confidence that he can figure things out for himself, and I really admire that about him.

Jake:

He's got a good social life, his grades are doing great and he's working hard at his sport.

Don:

Fort Wayne is a small city in northeastern Indiana with a population of probably 300,000, but in the outskirts, and Vicki and I have lived our whole lives here.

Vicki:

We were high school sweethearts, got married, and four years later, started a family.

Don:

From the time he was born, Seth was never really a complainer. He never asked for anything, he was just easy laid back. He's always been that way, even now as a young teenager.

Vicki:

He had his sports physical in the summer and the doctor noticed that he had some curvature, had some rotation in his spine. He just commented that this is something we just need to keep an eye on. I didn't think anything of it, no one in our family has scoliosis, so just put it on the back burner and didn't think about it.

Don:

Then it was probably some time, a year or so later, when we noticed him walking around the house without a shirt on, that something didn't look right, the curvature of his back, the shoulder blade being distorted. At that point, we had a family friend of ours who was a chiropractor, and we took Seth to see her and take a look at it.

Vicki:

She took us right away into her office and took an x-ray. I think at that time, he might've been in the low 30s, his degree, it's a thoracic curve only, and we began treatments with her.

Seth:

It was very painful and my rotation, flexibility, weren't very good at all. It got to the point where I would sit out some recesses because of back pain because I just couldn't do it, couldn't go out there and play with my friends, which was really hard on me. I was doing exercises that my chiropractor was recommending for me, which did seem to slow down my curvature's growth, but it ultimately wasn't going to stop it. It seemed that there was only one way to help me, and that was through surgery.

Vicki:

She had referred us to another set of doctors, and then we had made an appointment with them. It was through that set of doctors that we learned of a Facebook group that was a support for parents with children with scoliosis. Then it was through this Facebook group that we learned about Shriners.

Don:

But we always had a fear of how is this going to affect his life, his development, how's he going to be able to participate in the youth sports that he so much loved to do. Not only that, but just his growth as a young child.

Vicki:

We had heard that Shriners had a guideline, they had parameters that the child had to meet for them to do the surgery because they were involved with the FDA and this study. We were hopeful that Seth could meet those parameters, we thought that he did fit into that window. The more we read about VBT, we saw that this was the solution for Seth. It was the only solution that we could get behind. This is a non-invasive surgery, it was not the fusion that everyone had talked about in the past as a solution for scoliosis.

Joshua Pahys:

Scoliosis is an abnormal curvature of the spine. There's a number of reasons it can arise, from the congenital, which is you may have abnormal bones or the bones may be stuck together that causes that curvature, or there's some sort of neurologic issue in the spinal cord that can cause it. The most common that we see as the idiopathic scoliosis in the adolescent population, where it's diagnosed above the age of 10. The majority of those patients are actually females, it's about an 8:1 female to male ratio that we see. We still don't know why, which is interesting after all the studies we've been doing. We still call it idiopathic scoliosis, meaning we still don't know exactly what the etiology is. For whatever reason, we think the anterior front aspect of the spine starts to grow a little bit faster than the back and then the curve of the spine starts to curve and rotate. It can go at varying paces and all depends on how fast the child is growing.

We did a lot of the pioneer work here, and it really landed on something called vertebral body tethering. What it is, it's a growth modulation procedure. We're trying to harness the remaining growth of the child, which can negatively impact them because the more they grow, the bigger the curve gets, so can we reverse that and actually turn it in the other direction? What growth modulation procedure does it tries to compress the growth plates asymmetrically. If you squeeze the growth plates on one side, that will slow down the growth, and if you relieve pressure on the inside of that curve, or the concave portion, that growth plate will theoretically grow faster or asymmetrically compared to the contralateral side.

A nice part about it is you're not actually fusing the vertebrae, you're allowing the vertebrae to continue to move. The screws that are placed into the spine and the front of the chest through these small little ports on the side that's done all via thoracoscopic cameras does not fuse the bones together. They're connected by a flexible cord, so that will allow those motion segments to be preserved. That, we think, will have better implications over the long-term.

Don:

From the moment that we first arrived at Shriners, the greeting at the front desk was very welcoming. From that point on, we felt very comfortable in putting Seth in the hands of the people from Shriners. From the nurses to the doctors, even the guys that run the parking garage, it was an overwhelming feeling of just love and support for the kids.

Vicki:

Dr. Pahys took the time to really talk to Seth and find out what his activities were and what was best for. The attitude was just a lot more towards Seth's needs versus what the medical doctors could achieve. We were really happy with what Shriners had to offer.

Seth:

It was scary, but being with Dr. Pahys and his staff, I felt a little more comfortable. You can definitely tell that they know what they're doing and they're experts in their field. I felt very comfortable being with them, so that gave me a little more assurance that my outcome was going to be good.

Vicki:

When it was over, Dr. Pahys came out and he had some x-rays for us to keep and showed us the progress that Seth had. To see the change, he had x-rays from before and x-rays after, but we were so thankful that he had that opportunity.

Joshua Pahys:

Now, he did very well after surgery, I remember. He was one of the ones that just kind of got up, got moving, and couldn't be bothered by all the complaints that most folks have. He just had his eyes forward and was ready to go and let's get up, let's get walking. He did that more and more each day and then he was gone, he was out of the hospital in no time. We were just really, really impressed at how resilient he was.

Don:

At home, down in our basement, we measured him and marked it on a two-by-four and dated it, where he was at. A week later, when we came home, we did it again, and he had grown an inch just coming out of surgery. He was pretty excited about that.

Now, after VBT, he can do anything he wants. It's fantastic. When we watch him play golf now, there's no restriction in movement. He can swing a golf club and do anything that he wants to do with it. He can do anything else, he works out. Because of Shriners Hospital, makes that all possible. I'm forever thankful for that.

Seth:

After my surgery, since I couldn't play football, my options were a little bit more limited, I went to golf. I like the mental challenge of it. It's very easy to get in your head. I want to play in the state tournament this year, do very well there and then make my way up to the D1 golf level. Hopefully, that will help me propel myself to the professional level and play either on mini tours or maybe as an instructor.

Jake:

When he wants to read these books, the motivational self-improvement books, and I think he's taken a lot of that in the heart. Once those books were recommended, he acted like a sponge, from everything he heard from college golf coaches in pursuit of his college golf career. I think he's really taken a lot of those lessons to heart, and he's even applied some of that to other things, where he's trying to learn about random stock exchanges.

BJ Sutherland:

Definitely can see him being a collegiate player. His honing of his craft over the last two years, just to be more consistent. He's a great student, which is going to open up his possibilities for what type of school he would want to be in. Great grades, great character kid, he's a great leader on our team.

Seth:

Religion is very important in my life. Between going to church and going to youth group, I can find all that there. It's very nice to have a little time to hang out with my friends too, maybe play some ping pong or we golf, or just board games. It's very fun.

Nate Bienz:

Out of all of the youth that we have, he's probably one of the ones who was more mature. I've never seen him be anything but courteous and considerate when dealing with other people. Yeah, just a very fine young man that we're very happy to have here.

Joshua Pahys:

His maturity and just his positive attitude I think is infectious. I think that's something that has, again, really stuck with me. When we met Seth and then we've been able to follow him, each time in the clinics when we see him, I would just get a high five from him. He's always smiling, he's always happy, he's always got a great attitude about things. Then again, his willingness to help other patients, I think again has been just so helpful for us and for other patients.

Nathan:

I think he has a natural born leadership quality to him and that's what makes him such a great fit to be in this position. He displays a level of confidence, caring and just an energy about him that I think others also around him admire and look up to.

Jake:

I would just want his legacy to be you can do anything you'll put your mind to and that you can work hard and make those goals become a reality if you're dedicated to it, and even some circumstances that could be discouraging, you can turn them around and really work them to your benefit, just as maybe you had a little setback there but I think that it can just be something to add fuel to your fire.

Vicki:

I think his attitude, he's always had a pleasant disposition. I think happiness is something he'll always have. However he measures it, I hope that he will always have that health, happiness, success in his life.

Don:

Mostly is that I'm just proud of him. I'm proud of the way he's handled the challenges that he's faced, I'm proud of the young man he's turned out to be, and I've just enjoyed being his dad.

Seth:

It was really scary to me. I was thinking that maybe this was going to be a huge, big surgery, very scary, long recovery, and maybe I won't even get back to being half as athletic or what I could be, but I'm glad to see that now I can do all the things that I feel like I would be able to do without scoliosis.

Shriners has given me a lot. Without them, I couldn't do half the things that I can do today. I feel that there's just no way that I can give back enough, but this is a start. I want to be remembered as a hardworking person who could get along with a lot of different people, but also as a guy who was very strong in his faith and did a lot of good works for people and for himself.


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

Mia, 16, was born with a severe case of infantile idiopathic scoliosis. Her journey with Shriners Hospitals for Children began when she was 2, when she was first seen at the St. Louis location. Mia’s treatments have included halo traction to gradually straighten and stretch her spine, as well as nearly 20 surgeries. Mia’s passion is theater and singing, and she has been featured in several of our commercials. Mia was also part of the Shriners children’s choir who performed in a recent recording of Foreigner’s hit song, "I Want to Know What Love Is." Meet National Patient Ambassador Mia and see her story.
View Transcript
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.

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 Sycamorians if 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 very thrilled and excited. And then upon delivery, that's kind of the moment when our world changed forever.

Peg:
I was privileged to 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 palate. 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 Anchorage. I learned so many life skills, whether it's mowing the grass, operating equipment, chopping woods, 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 palate. He started losing weight within 24 hours. 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. I said, "Kelly I want you to take a look at Shriners hospital because 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 Connor 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 of little minor things done.

Lee Alkureishi:
At Shriners Hospitals for Children, 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 taking some bone from his hip to do that. He's also had a couple of surgeries with me to place traction hooks, which help to guide the development of his jaws to minimize the gap between his teeth.

Lee Alkureishi:
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 the 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 the hospital that makes this best place in the world to be.

Connor:
This team at Shriner's is amazing. From Mary O'Gara, to Dr. Alkureishi, 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, mental disability, and 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:
Connor's 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 had a handful of challenges of my own. From making friends at school because I had a messed up lip. I kind of looked at myself at sometimes at a young age and I was 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 the 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 in 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. 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, truthfully people say words can't 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 as 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.

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