Jack Clark, 12, was born to stand out. He excels in sports, lights up a room with his infectious smile, amazes bystanders with dance moves on skates, and walks with a gait unique to him – with a prosthesis covered in flames. Jack was born with a disability, but he’s never let it slow him down. From the wrestling mat, to the roller skating rink, he always finds a way to thrive in the face of adversity.
“Most people see my disability as a disadvantage, but personally I see it as an advantage,” said Jack.
Jack was born with rare conditions affecting both of his legs – proximal femoral focal deficiency (PFFD) in both thigh bones and fibular hemimelia in the left lower leg. Isolated PFFD occurs in about one in 50,000 children and fibular hemimilia occurs in about one in 40,000 children.
“Jack’s case is extremely rare,” said Dr. Vincent Mosca, chief of foot and limb deformities at Seattle Children’s. “There are very few kids who have what Jack has. To have one of the conditions affecting one of the bones is rare, but to have both conditions affecting three of the four long bones of the lower extremities is incredibly rare.”
In utero, around 20 weeks, doctors discovered Jack’s legs weren’t developing at a normal rate. They were unsure of what to expect until he was born.
It was shortly after doctors made their discovery when Jack’s parents made a discovery of their own. They found him. His biological mother placed him up for adoption a few months before his birth, and the stars aligned to bring Kurt Clark and his wife, Sherry, into Jack’s life.
“We came into the adoption knowing there was something wrong with his legs,” said Clark. “But we immediately knew we would say yes. It was meant to be. Jack’s birth mom chose us.”
A few months later, Jack came into the world.
“He was perfectly healthy, aside from his disability,” said Clark.
Leaving it up to Jack
Two weeks after Jack was born, he had his first appointment with the Limb Differences Clinic at Seattle Children’s.
“Both of his legs are affected in different ways, causing them to not be symmetric,” said Mosca. “He was genetically programmed to not have hip joints. The upper 30 to 40% of the right thigh bone never formed, which makes him shorter in stature on that side than he would otherwise be. His left side is even shorter. In the lower leg, the fibula never formed at all and the tibia is around 25% shorter than the right side. The upper 70% of the left thigh bone never formed, making the entire left lower extremity significantly shorter than it should be. He’s also missing two outer toes on his left foot and his ankle is out of normal alignment.”
Jack’s unique anatomy made devising a care plan a challenge.
“We had to be creative and think outside of the box,” said Mosca.
Because both of Jack’s legs are affected in different ways, it made his case complex. There was no straightforward approach. Instead there were many different options. They discussed different possibilities all aimed at helping Jack live a fulfilling, active life. One option was to amputate his left foot. Ultimately, the family decided to wait. Jack’s parents wanted him to be able to make that decision for himself when he was older.
As Jack got older, he became more involved in his treatment plan. He was thankful for his parent’s decision to let him decide whether to amputate or not. He said over the years, he’s grown fond of what he calls his ‘little foot.’ Because he’s had it since he was little, he’s learned how to use it to his advantage, especially in activities like wrestling.
A natural athlete connects with his hero
At an early age, it was apparent Jack would be a gifted athlete. According to his father, his upper body strength was remarkable from day one. When he was 6 months old he would pull himself around the house using his arms. By 2 years old, he was strong enough to do handstands.
“Jack has always exceeded expectations,” said Clark with a smile.
Today, Jack is a talented wrestler with the Eastside Wrestling Club. He was drawn to the sport after watching YouTube videos of Anthony Robles. Robles and Jack have a lot in common. Both have limb differences and are incredible athletes. Robles, who was born with one leg, is a 3-time wrestling All-American at Arizona State University, and won the 2011 NCAA Division 1 national wrestling championship.
“He’s kind of my hero,” said Jack.
Watching Robles inspired Jack. They carry with them a similar mindset – that they can be unstoppable.
“He understood from watching Anthony that wrestling is more about strategy than body shape,” said Clark. “He knew then it was something he could excel in.”
When Jack wrestles he does so without his prosthesis.
This week, Jack got the surprise of his life. Robles heard about his story and personally called him to offer words of encouragement and support.
“I’m speechless,” said Jack after hanging up the phone with Robles. “I just met Anthony Robles,” he said in disbelief with a big smile on his face.
It was a conversation Jack will remember the rest of his life.
“It’s really cool that he said I’m an inspiration to him. He said I’m his hero,” said Jack. “I still can’t believe it. That was awesome!”
Being born a little different doesn’t come without hurdles. Jack has gotten used to people staring, and he’s had to learn how to respond to questions from people about why his legs look a little different. He doesn’t mind answering questions, but it can be hard to forget the hurtful comments he hears whispered behind his back.
Jack wants people to know, “I’m just like you, only a little different.”
Mosca, who treats children everyday with limb differences, hopes Jack’s story will inspire others.
“Different is okay,” said Mosca. “Jack has a visible difference, but with his personality and abilities, he’s been able to overcome it and succeed. No child should have to hide their difference. If he can succeed up until this point, he’s going to be able to succeed forever. He’s going to continue to show us what he can do physically and find ways to excel. He’s a remarkable kid.”
Jack’s message to others is one of hope and strength.
“To any kid who may feel inadequate, don’t give up,” said Jack. “Find a way. Find a way around the bump in the road. Instead of giving up, push yourself up. If life brings you down because you’re different, push that aside. At times, life is going to be hard, but you can overcome anything.”