Custom Publication of the Bangor Daily News

Shriners Hospital for Children staff became like family for Stacia Caron

When fraternal twins Brittany and Stacia Caron (second and third from left) were born in January 1993, doctors soon determined that Stacia suffered from a rare genetic disorder that affected her hands and feet. After an Anah Shriner sponsored Stacia to be evaluated at the Shriners Hospital for Children in Springfield, Mass., she was initially seen there in July 1993. The remarkable Shrine medical care that Stacia has received since then has let her enjoy a busy life at school and with her family, including her father and mother, Steve and Bobbie-Jo Caron, and her younger sister, Madalyn. The family recently posed with Stacia’s black-and-white paint, C-J.
Staples Photography
When fraternal twins Brittany and Stacia Caron (second and third from left) were born in January 1993, doctors soon determined that Stacia suffered from a rare genetic disorder that affected her hands and feet. After an Anah Shriner sponsored Stacia to be evaluated at the Shriners Hospital for Children in Springfield, Mass., she was initially seen there in July 1993. The remarkable Shrine medical care that Stacia has received since then has let her enjoy a busy life at school and with her family, including her father and mother, Steve and Bobbie-Jo Caron, and her younger sister, Madalyn. The family recently posed with Stacia’s black-and-white paint, C-J. Buy Photo
Posted Sept. 07, 2012, at 9:37 a.m.

When Bobbie-Jo Caron of Chapman gave birth to fraternal twin daughters Brittany and Stacia “seven weeks early” on Jan. 25, 1993, “a doctor said there was a problem” with Baby B, Bobbie-Jo said. “We weren’t certain what her diagnosis was.”

After consulting with geneticists and pediatricians, Bobbie-Jo and her husband, Steve, learned that Stacia had been born with oralmandibular hypogenesis spectrum, “a one-in-a-million disruption when the genes are forming early on,” Bobbie-Jo said. “Being a twin, it doubles the risk.”

“It disrupts the formation of the outer extremities and the mandibular (the lower jawbone),” she said. Fortunately the syn-drome only affected Stacia’s hands and feet.

Bobbie-Jo and Steve both work at The Aroostook Medical Center, she as an advancement specialist, he as the manager of maintenance and engineering services. Not long after the twins were born, their parents heard from TAMC EMT Fred Par-sons, who belongs to Anah Shrine.

“He contacted Steve and said he knew some folks who could help us if we wanted, when we were ready,” Bobbie-Jo re-called.

The Carons submitted an application to the Shriners Hospital for Children in Springfield, Mass. Hospital staffers then scheduled Stacia to be seen at in the hospital in Springfield in July 1993, shortly after an initial evaluation at a local screening clinic.

Dr. David Dravric was the clinician who initially saw Stacia at the Springfield hospital; he has been her clinician since then. “They gave us some suggestions of what they would like to do,” Bobbie-Jo said. “Their first priority was her feet, because she would walk before she could write.”

Stacia was 13 months old when she underwent a partial amputation of both feet so that “prosthetic fitting is much easier,” Bobbie-Jo recalled. She and Steve “stayed very close by” during that time and received “excellent instructions” about caring for Stacia and her casts after arriving home.

In late July 1994, Stacia was fitted for her first prosthetic feet, which were made at the Shrine Hospital in Springfield. “On July 28, she took her first steps,” Bobbie-Jo said.

Having a twin sister has made measuring Stacia for her prosthetics easy; “they simply measure Brittany,” Bobbie-Jo ex-plained. This summer Stacia received her 15th and last prosthetic feet from the Shrine.

She can wear any footwear, boot or shoe, with heels a quarter inch or less in height. Learning early on to walk on the balls of her feet, Stacia likes to wear Crocs when she does not wear her prosthetics.

She has also had surgery on each hand, the left hand in 2001 and the right hand in 2002.

Stacia and Brittany have always been inseparable; they attended Mapleton Elementary School together and graduated from Presque Isle High School in June 2012. Stacia was Little Miss Mapleton in 2000.

At PIHS, Stacia played freshman soccer, managed the girls’ soccer team, and managed the girls’ varsity basketball team. She was selected as the Maine winner of the 2012 McDonald’s Spirit Award for the East.

Brittany played soccer, ran track and field, and belonged to Future Farmers of America. She is a talented photographer.

The sisters will continue their schooling together as they attend Northern Maine Community College in Presque Isle this fall. Brittany will study nursing and perhaps ultimately will become a midwife. Stacia will pursue liberal studies; she is torn between obtaining a degree in art or veterinary medicine.

Along with their mom and their younger sister, Madalyn, Brittany and Stacia ride horses. An equestrienne since she was 5, Stacia rides a paint named C-J.

The Shrine has covered Stacia’s medical care since her first visit to the Springfield hospital. “She was going to be a million-dollar baby, we were told when she was young,” Bobbie-Jo said.

“I don’t know what we would have done if we didn’t have the Shrine,” she said. “They taught her to be strong, to be self-sufficient.”

“They’ve helped me a lot,” Stacia said during an interview at her mother’s office at TAMC. “Walking through the [hospital] doors, you don’t feel like you’re walking into a hospital. They treat the family very well.”

“What I liked about the Shrine hospital as a whole, is they make the family welcome,” Steve Caron said.

During the family’s many visits to Springfield, Bobbie-Jo has met many parents whose children were being treated there. “It’s such a gratifying experience to be friends with people who have a common interest,” she said.

Already a Master Mason, Steve joined the Shrine years ago. Steve is now “Ruffles” the Shrine clown, and in that guise he appears at each spring’s Anah Shrine Circus in Presque Isle and Bangor. Brittany and Stacia always volunteer to help at the circus, and they have volunteered at the annual Children’s Christmas party hosted by the Aroostook County Shrine Club.

Steve has spoken with other Aroostook County parents about the free screening offered at Shrine mobile clinics, often held at various Maine hospitals. “It is gratifying to see [Maine] families get referred to the [Springfield] hospital,” he said.

During the Carons’ recent — and likely last — trip to the Springfield hospital, “seeing the familiar faces, the sights, the smells” triggered an emotional response in Bobbie-Jo.

“The flood of memories and feelings once experienced there came rushing back in a good way, assuring me that as a parent, choosing to entrust these heroes with our child’s life was the right choice,” she said.

“The caregivers at Shriner’s [hospital] in Springfield have no idea the difference they have made in that young woman’s life; they have given her hope and love,” Bobbie-Jo said.

SEE COMMENTS →

ADVERTISEMENT | Grow your business
ADVERTISEMENT | Grow your business