Patient Information
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.