No Boundaries: Gianna's Story

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 non-functional below the knee. And although she could have been able to do some things with that non-functional 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 OBGYN, 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. And they had talked about, well, there's leg lengthening procedures, there's amputations. And certainly we were hoping for a leg lengthening procedure, but as that discrepancy grew, we started to realize that that option probably wasn't as viable of an option for her.

Devon:

She was born, and she was perfect. And it was so calm and peaceful in that moment, and I think having Sofia 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.

The day of surgery, we came up to the hospital. You come really early in the morning, and it just was a calm day. Even though Gianna probably doesn't remember it, I'm sure there's a lot of trauma. It is physical trauma that you're putting your child through. And that is something that as a parent, it's very frightening. But she came out of it like a champ.

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 scenarios, and they've just always made me feel worthy of being there, and feel like I could do anything.

Speaker 6:

Good girl, Gigi.

Sofia:

You did it!

Devon:

Her prosthetist was Tony Ellis. He would make her feel comfortable. The relationship between a prosthetist and a patient is so intimate.

Anthony Ellis:

She has today, the same personality she had when she was one year old. She was very playful, very outgoing, and Gigi was a people person. She did not shy away from a stranger walking into the room. She was that kind of person.

Devon:

The trust they built, the love they built together. It really was an amazing process, knowing that when we got there, there was no fear for her. She had a routine, people she knew. Denis was amazing. He also is an amputee, so as a parent, he can tell me ways to wash the prosthetic. Simple details that I wouldn't know, that they could share with us to make our life just a little bit easier.

Denis Jordan:

Gianna was very precocious. She was, I'll have to say, a wild child. Doesn't matter what anybody considered a disability, she didn't have one. And you couldn't have a better patient, to be honest with you. Fearless, just ready to go.

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:

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. 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.

Matthew:

What makes me proud of Gianna, is that she's able to do multiple activities at once, if she wants to. If she wants to do something, she just decides, okay, let's do it. Instead of, well, this might happen and then this might happen. She just does what she wants.

Corey Lerner:

She was our number one doubles player. And she as an overall person, really inspires not only myself but the other girls. Because she comes onto the court with a lot of vigor and energy, and she motivates the team not just as an individual, but just to collectively get everybody in the tennis mood.

Christina Rising:

I think Gianna is a person that is really receptive to feedback, which I think is a very good thing for a student. Having the confidence to be able to hear criticism and be able to take that, learn from that and grow from that, I think is a demonstration of her ability and her confidence.

Devon:

One thing that I knew when Gianna was born, she was going to make us better people. She would make me a better mother, she would make me a better spouse, she'd make me a better person. And I think she's done that for all of us in the family. She raises the bar. We don't have a lot of excuses in this house.

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 no day's easy for her, but she always has a great attitude about just getting up and going.

Gianna:

When I think of my dad being a Shriner, I feel so grateful for him, and my family, and Shriners and Masons. Because he's gotten into it because of me. And he has joined a community, and he's been a part of it, and he's changing things in Shriners Hospital. What I'm proud of the most in my life is probably my personality and my confidence. Because I went through points in my life where I did not think I was going to be the person I am today. I was really down, I was really low in my life. I didn't believe in myself. I'm proud of who I've become. 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.