A mother's search for answers led her family to specialized orthopedic care for amniotic band syndrome and Charcot-Marie-Tooth disease
For the past four years, this commitment has meant making a nine-and-a-half-hour trip from central Louisiana to Shriners Children's St. Louis. The trek isn’t easy, but she says it’s worth every mile for the specialized pediatric orthopedic care that he needs.
“We have traveled probably over 12,000 miles because we believe in and love our care team we have established with y'all," said Summer.
Following a serious car accident during her pregnancy, Summer learned that Tayte had developed intrauterine growth restriction and amniotic band syndrome.
When Tayte was born prematurely at 35 weeks, doctors discovered the effects of amniotic band syndrome on his developing limbs. The condition affected his left hand, where his index and middle fingers had not fully developed, as well as the big toe on his right foot.
While still in the NICU, genetic testing revealed an additional diagnosis: Charcot-Marie-Tooth disease, a genetic condition that affects the peripheral nerves.
“There were many specialist appointments, many questions and very few answers. As a mother, it was terrifying to face so much uncertainty,” Summer said.
As Tayte grew, Summer became increasingly determined to find a team that would see her son the way she did: not as a complex medical condition, but as a little boy with endless potential. This search ultimately led their family to Shriners Children’s St. Louis – a decision Summer said changed everything. For the first time, she felt like she had found a team of physicians that understood both her son's medical needs and his promising future.
The team at Shriners never saw Tayte as a diagnosis. They saw him as a child first. They took the time to explain procedures, answer questions, calm fears and include him in his own care.
For a family navigating a dual diagnosis, this support meant everything.
“The care we received went far beyond the operating room. Every doctor, nurse, therapist and staff member helped make difficult situations feel a little less scary. They celebrated victories with us, encouraged us through setbacks, and reminded us that Tayte was capable of so much more than the limitations others might see,” Summer said.
Over the years, Tayte has undergone multiple medical procedures and surgeries. Among the most impactful have been two hand surgeries performed here at Shriners Children's. The goal? To both improve Tayte’s hand function and give him greater independence and confidence as he grows.
“As a parent, there are few things harder than handing your child over for surgery,” said Summer. “The fear, anxiety and uncertainty can be overwhelming. But every time we walked through the doors at Shriners, we were met with compassion, understanding and hope."
While Tayte’s story is still being written, one thing is certain: his future is full of possibilities. “He is stronger than anyone imagined,” Summer said.
Today, Tayte spends his days doing what kids do best – playing, exploring and embracing life with the same determination that has carried him through every challenge.
Tayte is flourishing, but Summer knows he didn’t get here alone. Looking back, Summer credits much of Tayte's success to the team that believed in him from the very beginning. For a mother who once faced so much uncertainty, finding that support changed everything.
"We are incredibly grateful to Shriners Children's, Charles Goldfarb, M.D., Lindley Wall, M.D., and Mark Miller, M.D., especially for being part of that story and for helping our son continue to thrive.”
Perhaps her final words say it best:
“Thank you for seeing his potential, believing in his future, and caring for him as if he were one of your own.”
He stands next to the Silent Messenger statue while sporting his signature smile.
