Jace Adame was like most two-year-olds. He loved dinosaurs — T-rexes, especially — robots and pretending he was a superhero. But, before his third birthday, his mother Nicole started noticing strange symptoms on his face. First, a red discoloration under his left eye seemed to get darker. Then grey hair appeared behind his left ear. It seemed, too, that the left side of his face was getting smaller.
Nicole was alarmed and took Jace to his pediatrician when the first symptom appeared.
“Everyone was so dismissive. I was sent to dermatologists who said it was eczema and prescribed creams. But I knew it was something else,” said Nicole.
Jace’s mom didn’t give up. She scoured the internet to find a diagnosis, and finally, a doctor confirmed it.
A Long Road Ahead: Parry Romberg Syndrome
Jace was diagnosed by Dr. Mark Miller of UT Health San Antonio with a rare condition called Parry Romberg Syndrome (PRS), otherwise known as progressive hemifacial atrophy. PRS impacts just one out of every 250,000 kids.
“For some of the doctors we’ve visited, Jace is the first or second patient they’ve ever had with this condition,” said Nicole.
He was also diagnosed with Juvenile Seronegative Polyarthritis, causing severe joint pain and swelling. Dr. Ruy Carrasco, a pediatric rheumatologist with Pediatric Rheumatology Consultants, diagnosed and now treats his arthritis condition, which requires monthly infusions in the South Austin clinic. It’s how our practice became so close with young Jace and championed him along his arduous journey.
To repair some of the facial atrophy and prevent it from worsening as he grows, Jace has undergone a unique free flap surgery at the University of Wisconsin under a plastic surgeon Dr. John Siebert, one of the only surgeons in the US who has treated PRS. “Free flap” is a term used to describe when tissue is surgically removed from one part of the body and transferred to another part of the body for reconstruction. In Jace’s case, the rebuilding will be the left side of his face, and the skin used came from his back. It’s a grueling and challenging surgery.
“It was a difficult decision to proceed with the surgery, but his disease was progressing rapidly. Jace was aware it was happening, too. He’d ask, ‘why does my eye look different?’. We just want him to have the best quality of life,” said Nicole
Jace’s first surgery was in December 2020, and the second took place in July 2021. Another one is scheduled for December
“Our PRC team has become very close with Jace and his family, as we see him every month for his treatments. We love hearing his voice and feeling his energy when he is in the clinic with us,” said Amanda Ortiz, Dr. Carrasco’s nurse.
Jace is now five years old. Despite all he has gone through, his spirit remains bright. His two older siblings and parents describe him as someone who commands the energy of the room. Dr. Carrasco agrees.
“Jace is a remarkable and resilient little boy. He is a superhero in every sense of the word,” he described.
Dr. Carrasco and the staff of Pediatric Rheumatology Consultants provided Jace and his family goodies and toys as his family headed on their road trip to Wisconsin for Jace’s surgeries. While Jace’s journey is just beginning, there are bright lights ahead for the tiny superhero.
Nicole and Jace’s dad, Alfonso, also say that their family bond has been the glue keeping them optimistic throughout the many twists and turns, “We have a strong and loving family and have been able to overcome it all together.”