From Desperation to Determination

Six-year-old Natalie has a spark that lights up any room.

She’s feisty, determined and full of life – qualities that have helped her navigate a rare and challenging condition known as bilateral proximal femoral focal deficiency, a diagnosis that affects only one in 50,000 children.

Born prematurely at just 31 weeks, Natalie’s arrival was a whirlwind for her parents. Hanna and her husband did not know about her condition throughout the pregnancy. “When Natalie was born, it was a shock to everyone,” Hanna said. “We had no explanation, no clue, no help. No one knew what was going on.”

Despite the uncertainty, the hospital staff directed the family to Shriners Children’s Shreveport, where they found the answers and support they desperately needed. “Shriners [Children's] was our starting point." Hanna said. "They made us feel at ease and prepared us for what was ahead.”

Natalie faced numerous medical hurdles in her early years. She was born with clubfoot, which was corrected through braces and a procedure to clip her Achilles tendon. By the time she was 3, Natalie began moving around independently by scooting. Although she found this movement comfortable, it ultimately led to complications. “Over time, her tibia and fibula fused together, and she never developed kneecaps,” Hanna said.

To address her unique needs, Natalie began seeing pediatric orthopedic surgeon Patrick Powell, M.D., at Shriners Children's Shreveport. When she was 5, she underwent a life-changing osteotomy, where her bones were carefully realigned and secured with an external fixator. “It was a scary process because we didn’t know anyone whose child had gone through this," Hanna said. "But the staff answered every question and made sure we felt prepared.”

Even with the challenges she faces, Natalie’s resilience shines. She’s thriving with her external fixator, and her progress has been remarkable. “Her latest X-rays looked phenomenal,” Hanna said. “We’ve been on top of her care to ensure she can get the fixator off as soon as possible.”

Natalie’s vibrant personality has made her a favorite in her school and community. While the fixator has temporarily limited her mobility, Natalie stays busy with hobbies like playing video games and spending time outdoors. She is also looking forward to an active future, and is excited to try wheelchair tennis and dreams of one day becoming a Paralympian.

For Hanna, this journey has been one of growth and adaptation. Her advice to other parents facing similar challenges is to seek out connections and support. “You’re not alone. There are people who understand your struggles and can help you navigate them.”

Natalie is eagerly anticipating the next chapter of her life, as her fixator is expected to come off in a few months. With her determination and the support of her family and care team at Shriners Children’s Shreveport, she's set to achieve whatever she sets her sights on. As Hanna put it: “Our hope is for her to have every opportunity to do what she wants. And knowing Natalie, she’s going to make it happen.”