Ed and Réne Gilman sometimes have to decide on major medical procedures for their son via text messages.
They pile thousands of miles on their black Jeep Patriot from continuous trips from Beaufort to Charleston for doctor appointments. Their three children return home ready to release energy, while Réne is ready to collapse.
At Medical University of South Carolina, 10-year-old Cannon Gilman sees various pediatric specialists related to a rare immune disorder. Réne schedules three or four appointments on the same day to consolidate trips but still has to make the drive once or twice each week.
“It’s an emotional roller coaster for families like us,” Ed said last week, as his wife began to cry.
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The Gilmans are among many who welcomed the news that MUSC would open a pediatric clinic in Beaufort in March. The facility on Ribaut Road will open March 7, with an open house March 23.
Specialists at the clinic will initially include cardiology, orthopedics, gastroentreology, hematology/oncology and general surgery. Endocrinology and rheumatology are expected to be added by July.
Cardiology and orthopedics were already offered through MUSC space in the Lowcountry Medical Group building. The new office will allow MUSC to expand its services and will be open five days a week, said Dr. Mark Scheurer, a pediatric cardiologist who will serve the clinic.
“Our providers are going to make the hour and a half drive so that the parents don’t,” Scheurer said. “... If you think of the three hours of travel and the appointment time in between, it’s asking the family to take a full day off of work.”
If you think of the three hours of travel and the appointment time in between, it's asking the family to take a full day off of work.
Dr. Mark Scheurer, pediatric cardiologist at MUSC
Cannon has hypogammaglobulinemia, an immune disorder. He receives blood plasma infusions once a month, for six hours at a time.
The procedure causes terrible headaches but has alleviated the chronic illnesses Cannon endured before his diagnosis at MUSC five years ago.
A student at Bridges Prep, Cannon wore a University of South Carolina T-shirt and a Carolina Panthers hat with his name sewn on the side during a recent visit to the site of the future clinic.
The hat was a gift following recent surgery to remove Cannon’s appendix. Because of his immune disorder, Cannon couldn’t be treated locally. He had to be transported to MUSC from Beaufort by ambulance at 1 a.m., the Jeep following behind.
The surgery was Cannon’s third, for different reasons.
The Gilmans hope the new clinic continues to expand. They see an immunologist, psychiatrist and pulmonologist.
Once they drove the three hours only for bloodwork.
During trips to Charleston, Réne often takes the children to the mall to walk for exercise. They sometimes pack meals but often buy McDonald’s in a pinch.
Travel and medical expenses mean money is tight.
The family doesn’t take traditional vacations. Ed schedules his vacation days to attend doctor’s appointments.
When he can’t take off, he and Réne text through important decisions that could affect Cannon’s health later in life.
Imagine the day, they say, when Ed can step away from his job as a mechanic and drive five minutes to make one of Cannon’s appointments.
“For so many people what is simple and normal, for us isn’t,” Ed said. “A lot of people can go to their local doctor and be home in time for lunch.”
Réne feels guilt continually saying no to the children’s requests after everything they endure (Cannon’s siblings are 7-year-old Caiden and 4-year-old Callee). So the parents go over the top for birthdays and Christmas.
The Panthers hat was a treat, on sale for $10. The cashier asked Cannon if he wanted his name on the side, and the boy beamed.
“It’s not that any of it is inconvenient for me, because it’s not,” Réne said. “I just know how it affects them. Their childhood for the past five years has been driving to Charleston.”
Pediatric specialties included at new Beaufort MUSC clinic
- General surgery
- Endocrinology (by July)
- Rheumatology (by July)