Sean:
We were excited to find out what we were going to have for their second child, and the doctor quickly identified that she was going to be a girl, and then he started to continue to take some measurements and a few minutes later he came out and said, "I think I'm noticing something here." And it was first of all that she was missing a bone in her lower leg. He also noticed that the upper bone in her thigh or her thigh-bone was bowed and not as long as the right leg.
Robert H. Cho, MD:
In Gianna's case, she had a leg that was essentially nonfunctional below the knee, and although she could have been able to do some things with that nonfunctional leg, she would not be able to do as much as if she got an amputation and was fitted with a prosthesis. And so that type of decision isn't taken lightly, but we are fortunate that we take care of so many kids with this condition.
Devon:
It was very scary, very unexpected. You go in to find the sex of your baby and you find out we have other issues that we need to address. He called it proximal fibular focal deficiency.
Sean:
Fortunately, our OB-GYN, her husband was an orthopedist and he was actually friends with the Chief of Staff at Shriners in Los Angeles. And so very quickly he had us on the phone with an orthopedic just explaining to us what condition this was, what type of life we could expect.
Devon:
She was born and she was perfect, and it was so calm and peaceful in that moment, and I thank having Sophia already and her having a big sister life just, okay, let's go.
She was about three months old. We had our first visit at a clinic at Shriners, and the beauty of it is we could see another kid that was maybe a year old and we can see a three-year-old and we can see a five-year-old and seven and nine. We see these other kids that are there and they're smiling and they're laughing and they're with their families, and I can visualize what my child was going to be and how she was going to be. That was why we chose Shriners. We knew it wasn't just a surgery that was going to be completed and we were on our own. We had a community. There was physical therapists. There were people to help us with services in our community. It was the doctors, it was the processes. It was a community of people and families that we knew that this was the place that we could be with her for long term.
Gianna:
I remember just driving up to Shriners and always going through those doors and feeling so welcome and the people there were just so patient with me and so open to trying to give me the best possible leg and I know as a child, I've been difficult in some way, in some scenarios, and they've just always made me feel worthy of being there and feel like I could do anything.
Devon:
Gianna was always pushing the boundaries, always pushing how far she can climb up a tree, how fast she can go. She just would always push herself to keep up with her sister, keep up with the kids in the neighborhood, and go, go, go, go, go.
Gianna:
So with my sister, she was always doing sports and being active in our community, so I always looked up to her and I always wanted to be just like her, and so I went out and tried sports. I played soccer, softball, I did fencing for a little bit. I did tennis when I was younger, I did swimming. So whatever activity she would do, I would want to try too.
Sofia:
I think we have a special bond because I am not just like a protector because of her leg, but just as an older sister and especially now, I think our relationship has grown a lot as we've gotten older and more mature.
Sean:
I think what makes me most proud of her is just how she's grown up, how she perseveres, how she gets up every day and gets out of bed, puts on her leg. I have to understand that it's, no day easy for her, but she always has a great attitude about just getting up and going.
Gianna:
When I think about the legacy I leave behind, I want to be a person that people look towards for encouragement and inspiration. I want to be the person that shows strength and vulnerability and honesty. I want to show kids just like me that the limits are endless and they could do whatever they want and just you have to be active and you have to go and try.
