Throughout her pregnancy, doctors had told Gianlucca’s mother that her baby was missing his fibula. It wasn’t until after her C-section that they discovered it was actually the tibia that was affected—a significant difference that would impact his entire treatment plan.
“They were always telling me that he was missing the fibula, not the tibia,” Stephanie recalls. “And then when I got the C-section, we found out that he wasn’t missing the fibula, it was the tibia.”
What followed Gianlucca’s birth was an exhausting search for the right medical team. Gianlucca’s mother visited 11 different orthopedic surgeons, all of whom recommended the same thing: bilateral amputation with prosthetics for both legs. “They were all telling me that it was best to amputate both and then Gianlucca can use prosthetics,” she explains. But as a mother, something told her to keep searching for other options. Her persistence led her to Dr. Daniel Ruggles in Miami, and that’s where everything changed.
“I love him because he was such a nice doctor. He’s such a human,” she shares. “He really took the time to explain everything to us. And he was super honest with us.” Dr. Ruggles told her he could perform the surgery, but it would be his first time doing this specific type of reconstruction. His honesty and humility led to an even more important connection—he had been in contact with his mentor, Dr. Shawn Standard, who specialized in complex limb reconstruction.
The timing seemed almost miraculous. Dr. Standard was relocating from Maryland to practice at Nemours Children’s Hospital, Florida—much closer to their home. “This is just God playing everything for the best for Gianlucca,” says Stephanie. “We are not in Miami, we’re in Orlando. So, Nemours is very close to our home.” After this connection, Gianlucca continued his care with Dr. Standard at Nemours Children’s.
Stephanie also notes that the journey to Dr. Ruggles was facilitated by Dr. Jason Malone at Nemours Children’s, who had first suggested they get a second opinion from his colleague in Miami. “If it wasn’t for doctors like Dr. Ruggles and Dr. Malone, I would never have been able to meet Dr. Standard,” Stephanie says gratefully.
A Team Approach to Complex Care
When Gianlucca’s family met with Dr. Standard, they were presented with something they hadn’t experienced before: options, time to think, and a collaborative approach. “Mom, this is plan A, this is plan B. What do you want to do?” she remembers Dr. Standard saying. “You are the parent. No rush, no need to make the decision right this second. Just think about it, and let us know.”
Over several months, Gianlucca underwent three surgeries. The first surgery included an amputation and reconstruction of his right leg. Two more surgeries followed, with the final one removing all the hardware.
Dr. Standard invited Dr. Ruggles to be present during Gianlucca’s surgeries. “He said, ‘I really want Dr. Daniel Ruggles in the surgery,’ and he made it happen,” Stephanie shares. “They were both in Gianlucca’s surgery.”
The Recovery Journey
As with any parent watching their child go through medical procedures, the emotional toll was significant. “Me as a mom, I was freaking out the whole time. I wasn’t even like myself. I was thinking I’m not doing the right thing?” she admits.
But Gianlucca proved to be remarkably resilient. “Gianlucca is a strong boy. He is doing very well,” Stephanie shares proudly. The recovery periods went smoothly, and the communication with the Nemours team was excellent. “I can tell you I never had any issue.”
Today, at nearly 3-years-old, Gianlucca attends physical therapy at Nemours three to four days a week. He’s learning to use his temporary prosthetic and is making impressive progress. “Gianlucca, he’s a happy baby. He is doing so well,” his mother says. “He doesn’t stop. It’s like he’s a normal child. The only thing is that he’s just learning to walk now.” The medical team remains hopeful that the reconstructed right leg will be fully functional and that Gianlucca may not need additional surgeries in the future.
Advice for Other Families
“It’s a hard decision that I cannot speak for other parents, but it’s hard when it comes to your child,” says Stephanie. “When the word amputation comes, it’s a really hard word to take in. But, you always have to think what would be the best for your kids.”
Her advice is clear: don’t be afraid to seek out specialists, even if it means traveling. “For other parents, they need to reach out to the experts when it comes to this condition. Don’t hesitate, even if you have to travel, just do it because I think that they will never regret it.”
As Gianlucca continues his journey with Nemours Children’s Health, his mother remains grateful for the team that has supported them every step of the way. “I was scared at the beginning, but now I think that I did make the right choice.”
Looking ahead, she hopes that Dr. Standard’s work will continue to help other families facing similar challenges. “I’m hoping that whatever he’s planning to do in the future goes well, and that he will continue to grow his practice so that even more kids can be treated here.”
