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Rewriting Destiny: The Stories of Paige and Grayson

Rewriting Destiny: The Stories of Paige and Grayson

Every year, Shriners Children's selects two International Patient Ambassadors to represent the healthcare system's patients. We are proud to introduce our 2024-2025 International Patient Ambassadors Paige and Grayson, and share their incredible stories.
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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:

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.

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.

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:

So Paige was diagnosed with a disease process known as toxic epidermal necrolysis. You'll have an allergic reaction to a medication that you started 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.

Renee, Paige's Mother:

I will say Shriners did amazing things. They grafted her with the pig skin and her pigmentation damage is very, very limited.

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 is just ... It's an amazing thing to see.

Paige:

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 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. We were introduced to Grayson and were drawn to him. We were told that he might have some medical issues, and when we visited him, we saw that.

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 in his case, he has a lot of shortening, so he has a limb that's very short compared to the other side. 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.

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. I mean, every person that's ever helped me with my prosthetic ... I mean, 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?"

Ceci:

We are so grateful for Shriners. They have let Grayson have top-notch, incredible care, enabled him to lead a full life 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

Clay:

Easily, as a father, I'm most proud of his character.

Ceci:

I'm so proud of Grayson because he has not let his leg define him. People really love him and embrace him and see that true character of his.

Grayson:

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.