Our Philanthropy

Paige, Shriners Children's International Patient Ambassador:

Being brave means to not give up. Being brave means to try and ignore the negativity that comes your way and turn it into a positive. Essentially, being brave is to be you aside from what other people may think.

Josh, Paige's Father:

Where we live in southern Louisiana, family is everything. You depend on each other and you're always there when someone needs it. And without that, I don't know where we would've been. The family gatherings that we do and have and just get togethers, friends, family, everyone knows Paige. Everyone wants to be involved. It's an amazing thing to see when there's a South Louisiana family Get together.

Ryan:

I love my family because we're always together doing fun things, like riding the boat. Just going eat out for dinner is fun. Just enjoying each other as a family.

Josh:

Paige was a very, very vibrant, active little girl, the little social butterfly, very large friend group, into sports, just a very, very fun child to be around, full of love, laughter.

Renee, Paige's Mother:

She wanted to do makeup. I mean, goodness. Dressing up was her thing. She would come running out with all the random clothes.

Paige:

Childhood years were great until around my first grade year, and that's when I was prescribed seizure medications. And then I vividly remember, around the first week of second grade, I had a seizure in class. It was a physical seizure. Everyone could see and I was embarrassed. And then, from then on, I remember that was the point where my life started to not be fun.

Renee:

She was put on a new medication to control some breakthrough seizures. And during that timeframe, it was on March 23rd, I remember this date, she got Josh and I up from out of the bed and said, "Mom, I feel like there's bugs crawling on me." We inspected her bed. We were unsure what she was talking about. And then I flipped on the switch and I realized her face is swollen. She was running 102.3 fever. Rushed her to the ER. Got to the ER, brought all of her medications with a list of everything that we have given to her. ER doctors really didn't identify what she had immediately, so the symptoms progressed where I would simply touch her skin it would just fall off. By that point, she was so swollen, her lips were so swollen, they were blistering. The blisters in her face were tremendously bad.

Paige:

The fear in me was beyond. I was young. I was eight years old. I didn't know what to think. My parents obviously were not hiding their emotions. They were also very frantically scared and worried for me. And being in the hospital here in Lafayette, not knowing, and none of them knew what was wrong with me, I had no hope. I genuinely thought I was going to die. I was also on no pain medication, nothing. I felt it taking place and it was the worst pain ever.

Renee:

Talking to family through messaging and phone calls, my sister-in-Law actually is a nurse, and I sent her some pictures and she's the one that diagnosed her by pictures and sent us literature. And at that point, we started confronting the doctors about the diagnosis and they weren't aligned with us. We had to raise help basically and get her moved. And she was aware of a pediatric burn unit in Galveston. And at that point, that's how we got to Shriners.

Josh:

So when we finally arrived at Shriners, it was late at night and they had a team waiting when the ambulance pulled up and you could tell immediately that they were prepared and they knew what they were doing. The doctors were very open and honest with us and told us, "Hey, this is very serious." But you could tell as soon as we arrived, we were in the right place.

Jong O. Lee, M.D., Chief of Burns, Shriners Children's Texas:

Paige was diagnosed with a disease process known as toxic epidermal necrolysis. 10% or less of your skin, when your body is involved, we typically call it a Stevens Johnson syndrome. If you have more than 30% involvement, we called it a toxic epidermal necrolysis, and Paige had toxic epidermal necrolysis because about 77% of her body was involved. You have an allergic reaction to a medication that you start taking and your skin starts to turn red and then develop blisters, and they slough off, which causes intense pain. And when your skin is sloughed off, then you can't protect your body from surrounding infections and bacteria. It affects any kind of a mucosal lining, such as inside your mouth, your lips, your windpipe, your lungs, your gastrointestinal tract. So those tend to take longer to heal.

Renee:

Her eyes were completely ruined. Thankfully, they had an amazing cornea specialist at Shriners that typically works out of the country that was there and did amazing things to her eyes. They grafted her eyes with amnion plus from a placenta and boasted her eyes shut to heal her corneas. So the burn doctor and the cornea specialist was tag teaming, both doing different things in one surgery. And I remember that that first surgery was hours long. It was terrible waiting. It didn't go well. She was bleeding so bad internally that she did not go to a recovery room. She went straight intubated and she wasn't breathing on her own. And things got serious and they came to us and told us she needed a blood transfusion. I was numb. I couldn't even talk to Josh. I didn't think anybody would understand. I know I wasn't alone, but I felt alone. And I was just praying to God that she would just live. And how could this have happened? A medication that you thought you were treating something did this to her.

Josh:

You feel like life has prepared you for a lot of things as a parent, but nothing prepares you for this, nothing What I saw in my little girl, nobody should have to go through.

Renee:

I had a nine-month-old and a three-year-old that I couldn't even think of them at that moment. It was all about her and just trying to get through the next day and ensure that she's alive.

Josh:

I remember it vividly, actually. Whenever she was bedridden and essentially in a medically-induced coma for quite a while because she had a feeding tube and a breathing tube and everything. And on the first day that she woke up and was able to really communicate with us, and then from there, we started the therapy of walking and stuff and holding my daughter's arm while she was trying to learn to walk again was a very bittersweet moment. It was amazing how far she had come already, but knowing that we had such a long road ahead, she's got to learn all this stuff again.

Angel Martinez:

When she was here as a patient all those years ago, I mean, she was just a little girl still, and she always enjoyed art and she made this outline of her hand. It was a drawing and it was outline of her hand. And on each finger, she wrote words. And if you read across the hand, it says, "Thank you for saving my life." And she gave that to the staff and it was such a remarkable piece of inspiration for the staff, but it was this little girl who had the thought to say thank you, to say in a simple drawing what it means to have your life saved.

Renee:

Paige healed wonderfully from the skin aspect. I will say Shriners did amazing things. They grabbed at her with the pig skin and her pigmentation damage is very, very limited. From second grade all the way to her freshman year of high school, this child endured 21 surgeries in between. A lot of miss school, a lot. Her eyes is our concern. Her eyes took a big beating. Right now, she's wearing these really cool prose lens. They're glass that she has the plunge in and out of her eyes, plunge in the morning. She doesn't produce tears and she has to plunge them out at night. The long-term plan for that is there's a chance she'll need a cornea transplant. She may have glaucoma, she could be blind because it affects mucous areas. I'm unsure if she's going to be able to have children.

Josh:

And really, when she was a freshman is when she was really able to complete a full year of school and I saw the happy, vibrant little girl come back out in her. And from there to where she's at today, it's an amazing thing to see.

Paige:

Yeah, high school was great. I felt like a normal person and I was able to conversate about what happened to me without feeling that embarrassment or I didn't want people to empathize and make it like, "Oh, she's been through so much. Let's make it easy for her." No, they were not like that. They were like, "No, she's been through so much. We know she's capable of so much more." And I think the people that were hard on me and pushed me is the ones I truly value and respect the most because I wouldn't be where I am without that push. Everyone needs a push. No one needs a soft landing. They have no ambition.

Brad Taylor:

Paige has inspired me because of her courage. I watched over her four years truly blossom through this, and I witnessed her stand up for people that were getting treated poorly. I think, because of her struggles and the courage that it took to overcome those, I think that made her the person who was able to stand and up to her peers in those moments and create the person that she is today.

Paige:

Now I'm in college and I'm majoring in business management. I definitely have a lot of interest in the business side of the world. I'm also working pretty much full-time. I'm a manager at a local boutique. I love my job, not only because I get to basically practice what I'm learning in school, I'm making people feel good. People come in for retail therapy and some people just come in to have someone to talk to. But I love fashion. So in the future, I hope to own businesses, but to not work them, just to work the backside of it.

Lance:

Proud of my sister because she overcame a very hard thing that a lot of people don't. And I'm just especially proud of her because from what I've been told, she literally overcame death and makes me very proud of her.

Renee:

Paige is fantastic. She is truly inspiring to me. She makes me so proud. I mean, she is awesome. I know she's going to do great things. That is for sure. She has a drive behind her that nobody's stopping her. She's going to go somewhere. Y'all remember her name. Her name's Paige. She's going to be somebody.

Josh:

She's one of the strongest and most determined 19-year-olds I've ever seen in my life. When she sets her mind to something, she knows that she can accomplish anything because she's already beat life. She's done it. There's no barrier that she can't overcome. She knows that, and I see it in her every day. I really believe with all my heart that if it were not for Shriners Children's that I probably would not have my daughter today. They saved her life.

Paige:

I'm excited to be an international patient ambassador for Shriners because I not only get to give back to the hospital, but I get to give others hope that are going through whatever they're going through, really, because there is hope and everyone deserves to hear that there is hope. Even though it's such a dark and unheard of situation, you'll make it out for sure. I feel very honored. It's definitely a huge title, but I think I'll be able to do good things, great things. I would want someone to remember me by she never gave up. She worked hard. She didn't rely on others around her to get where she was. She tried her hardest. I just want to be remembered as a young woman who has gone through a lot but doesn't use that to keep moving on in life.

Grayson, Shriners Children's International Patient Ambassador:

Hey, I'm Grayson. I'm 20 years old. I'm from Louisville, Kentucky, and I go to school at Harding University, which is in Searcy, Arkansas. I'm majoring in construction science with dreams of being a developer, and I'm from Ukraine.

Ceci, Grayson's Mother:

We struggled to have kids to begin with and we thought we were going to have our kids through adoption, and was, by the grace of God, able to have our daughter and then quickly got pregnant with our middle son and then thought we still needed to honor what was put on our hearts by the Lord for adoption. And so we ended up doing the adoption through Ukraine.

Clay, Grayson's Father:

It's really in the hands and the control of the Ministry of Adoption there and very little time to make decisions, so there's certainly anxiety that comes with that.

Ceci:

We went to the adoption agency and were given books and books and books of pages of little kids to look at. And they were like, "Hey, here's a little boy." It was just another person holding up another picture of Grayson, and I was like, "Clay, there he is." We actually had a mission trip from our church was there, and they brought to our attention the clip that was of Grayson with a local news station that said, "Here's a picture of a little boy," He's lying in his crib, and saying, "And he will never get adopted.

Clay:

We were introduced to Grayson, and we're drawn to him. We were told that he might have some medical issues. And when we visited him, we saw that. And the biggest medical issue with him was the PFFD or the shortened femur. In his case, he had the most severe level of that where he had no femur, so it was a severe medical event.

Ceci:

We have next door neighbors, good friends of ours whose brother-in-law was a prosthetist at Shriners. So we end up talking to Eric while we're in Ukraine, and he said, "Get me some pictures and I'll give them to the doctor."

Clay:

The orphanage allowed us to drive Grayson to a medical facility reasonably close, and they had what I'll call old school X-rays, not digital, but they did X-rays on his leg, and we walked out of there with literally images of his leg through those X-rays. And it was a sunny day, and we simply held him up against the sun and took pictures and we were able to email that back to Shriners.

Eric Miller, Manager of POPS Department, Shriners Children's Lexington:

I was actually driving into work one morning at our old hospital on Richmond Road and get this phone call and like, "Eric, we need to talk to you right now." And I was like, "Go ahead." And they told me the details, told me about Grayson's diagnosis, all the issues that they had been told about the hip and how you may not be able to walk well, things along those lines. So I just kind of provided information to the family, talking with Clay and Ceci about what I would do if it was my adoption. And in a nutshell, I just basically said, "Do it. We're going to be fine. God has blessed me with these talent and skills to be able to build prostheses." And I said, "Whatever he needs, he'll get it, and then go from there."

Clay:

Eric basically said, "We've got this," said, "Grayson will have the best care and the best treatment, and we'd love to take care of him." And that was huge. That was huge, our adoption process.

Ceci:

So then we knew what it was, we knew what we were going to do, which kind of eased our mind, and then went on ahead and proceeded with the adoption process. And everybody was overjoyed. We get home and big huge crew at the airport waiting to beat us. And the whole time, we kept showing grace and pictures and pictures of just saying, "Hattie, you sister, Brodie, your brother," and people through our whole family. And everybody was there, and you just see Grayson, and he was just lunges at Hattie and Brodie, and is hugging them. And it's just the sweetest thing. It was just like he was meant to always be in our family.

Grayson:

I'm so thankful and continually will be thankful for having a home life that was safe and was comfortable, and where I didn't have to pretend to be anything that I wasn't, and where I knew I could openly communicate with my parents about whatever was going on either in school or in my personal life.

Clay:

We were always very intentional about Grayson getting there on his own. And he was equipped to do it physically, but more than anything, he was mentally equipped to do it. He was always up for that challenge.

Ceci:

Grayson inspires me by his joy. He really is a joyful person. People really love him and embrace him, and they see that true character of his. He's got so much compassion. He's slow to anger. He has abundance of joy. He's mature beyond his years, but again, so many of those kind of things were nothing that we did. I think it is just how Grayson was designed to be.

Clay:

He really was more active than we ever imagined, but that obviously pleased us, his parents. We're an active family,

Vishwas R. Talwalkar, M.D., Chief of Staff, Shriners Children's Lexington:

So Grayson has proximal focal femoral deficiency, which is a process that can be very different in different children and it can involve a lot of deformity or difference in the hip joint, as well as the knee and the length and the shape of the femur, as well as the entire leg. And so in his case, he has a lot of shortening, so he has a limb that's very short compared to the other side, and some of the muscles don't work quite as well.

Grayson:

Shriners just had this atmosphere of just, okay, this is fun. They had games. I get to be here. I get to leave school early and go to my appointment. Every person that's ever helped me with my prosthetic, I could say, "Hey, this isn't feeling right," and immediately they would give me three or four options of like, "Oh, let's fix this. How does this feel?" Just everyone knew my name, even from the people checking us in to, I mean every single doctor. And I've had the same doctors for my entire time, so I've been able to build these relationships for years upon years.

Hattie:

Shriners was definitely a happy place, definitely a very joyful place. I used to go with Grayson sometimes when he went to his appointments just because, honestly, it was just a fun atmosphere and it was just a fun place to be. They had different playrooms and different games that Brodie and I could just play with while Grayson was in his appointment.

Vishwas R. Talwalkar:

Grayson is like a lot of the families that we get to know and watch them grow up because we met him when he was just an infant, and we were lucky enough that we met him and his whole family and we got to know them. And that's such a huge part of making such a big decision for a child because they have to make that decision before the child really has any idea what's going on. And what I remember most about Grayson when he was young is that he was a live wire, and he was all over the place a lot of these kids are, sometimes it's hard for the family to hear that perhaps doing an operation where you take off part of the leg is the best option that allows them to be as functional and avoid long periods of hospitalization. It's not the right answer for everyone, but after a long discussion and putting our heads together and lots of soul searching, it ended up being the correct one.

Ceci:

We are so grateful for Shriners for the opportunity that they have given us. They've Grayson have top notch incredible care. They've given him the best fitting prosthetic legs. They've been available anytime we've had any issues. They have enabled him to lead a full life, for him to be able to go out, do whatever he wants to do, and not one time think that he's wearing a prosthetic leg.

Raymond "Donny" Lee, Ed.D., Dean, Professor of Education, Harding University:

One of the things that inspires me most about Grayson is he doesn't skirt his challenges. He doesn't run away from them. He meets them head on. And when he meets them head on, he does it. I think, with a spirit, not just a determination, but really a spirit that is infectious to those around him. He invites you to join him in what he's doing. And to me, that is a great encouragement. He is a person who brings realness and authenticity and genuineness. He also brings a sense of hope and a sense of strength that many are searching for today.

Grayson:

I love Harding. At our orientation, each group kind of went to a different organization to either help clean up for the year or something like that, and my group happened to go to this organization called Lamplight, which is situated in kind of the warehouse of a laundromat, which is located in a trailer park community. We go into this community, and we knock on a door and we're like, "Hey, we just want to hang out." It's the mutual excitement that I'm here to hang out for just an hour, but these kids' hour is the best hour of their week because they go back to these homes that have four or five kids in them who don't get a lot of attention from a mother. And most of these kids, their fathers are either working or not present. And so we, as these volunteers, just get to come in and give these kids just an hour of what a childhood should be. And it just puts in of this is the world that we live in, and if for an hour we can make it better, shouldn't we do that?

Clay:

I am so proud of Grayson. Obviously, there's the physical accomplishments and those tangible things that he's done. Classically, he's done great. We're proud of him for that. But easily, easily, as a father, I'm most proud of his character and his heart. He really, really is the definition of a servant leader.

Brodie:

I'm proud of Grayson because he's a good person. He is a good role model. I have a bad day. He says, "Brodie, just keep your head up. Don't put your head down. Just believe in yourself," and it helps.

Ceci:

I'm so proud of Grayson because he has not let his leg define him. He has chosen to take what the Lord has given him and to use it to further the kingdom.

Grayson:

Shriners has given me so many years, I think it's like 16 years, and I am willing and more than able to offer them a year of my life just to talk about how awesome it is. I think that's so easy for me to do because I've got to experience that so many times. So I think my main goal with this role is, one, to it be a thankful role and to give my praise to the people that made it possible, but also to show these younger patients that it's okay. Right now, you may be going through a lot, but this care at Shriners is going to give you every opportunity to live life to the fullest, and they will be with you at every step of life. I know that I am physically different, and I know that I do have limitations, but I just haven't found those yet. And I think that's what it is, is every person at Shriners wants me to live life to the fullest.

Community with friends is such an important part of my life, and I wouldn't be the person I am today without my friends. I will easily take off my leg and just hand it to someone I've never met because it immediately takes away the weirdness of it. Immediately, they get to hold it and they get to be like, "Oh, okay." And then it's just something mechanic, and then they give it back. Embrace it. Let people make jokes. But I let my friends make jokes, but they have to know I'm going to be quick with it right back to them of a mutual understanding of this is something that has a chapter in my life, but it isn't the entire story. I am the one who gets to choose, okay, is this what's going to define me? Because now my friends will be like, "Yeah, sometimes I forget you have one leg," and that is all the validation that I need in life. When I think of the future, I get scared because of how awesome the present is. I just don't know how much better it can get.