Every two weeks, Ashton Morgan, 2, spends his day in Forrest General Hospital’s Radiology Department.
He and his mother, Mercedes, sit in what has become “their” room the better part of the day while the curly-headed boy with big brown eyes receives a life-saving infusion.
At 2 weeks old, Ashton was diagnosed with Pompe disease, a genetic disease that is both progressive and potentially life-threatening but manageable.
This neuromuscular disorder, which affects 1 in 138,000 infants, is characterized by the abnormal buildup of a sugar molecule – glycogen – inside cells.
Ashton’s body lacks the GAA enzyme that breaks down this sugar and turns it into energy. A buildup of sugar impairs the working of different organs and tissues, especially the heart, respiratory and skeletal muscles.
Prior to infusion treatments at Forrest General, which began in the fall of 2020, the Morgan family had to travel to Jackson twice a month for Ashton to receive treatments for this rare disorder. With two other children, the travel was putting a hardship on the family physically, emotionally and financially.
Hattiesburg Clinic physician and Ashton’s pediatrician Todd Benton began research to see if it would be possible for Forrest General to administer the infusion to his young patient.
“He (Benton) wouldn’t take no for an answer,” said Shannon Vega, R.N., patient care manager for radiology, who soon joined the effort for Ashton to be seen at Forrest General. “I have a 2-year-old grandbaby, same age, in Sumrall, so it just touched my heart,” Vega said. “We wanted to make it happen, but I couldn’t have done it without the staff.”
With the OK by administration (Vice President Millie Swan) and radiology service line administrator Joe Marcello, Vega – along with the entire radiology team; Kristi Nesler, clinical coordinator for pharmacy, and her team; Erin Potts, sales representative for the drug company; and the Family Birthplace, which donated a rocker for Ashton’s room – life became much easier for the Sumrall-based family.
In October 2020, infusion treatments began, but it was not without some in-service training first for staff.
On Fridays when Ashton walks into radiology, Marcello brings Ashton a gift.
“I do it mostly to help decrease the fear,” he said.
However, Ashton has become a pro and shows no trepidation when it’s time for the twice-monthly visits to the hospital.
Scott Rucker, R.N., said when he gets ready to take Ashton’s blood pressure, Ashton already knows the drill and flops his arm out. Vega describes him as “a pro … he’s got this.”
The infusion, through a port, takes four hours and then another hour of observance to make sure there are no side effects.
Mercedes said she loves being able to come to Forrest General rather than making the trip to Jackson.
“It’s so much easier,” she added. “He doesn’t get fussy or anything. He mostly just sits here and plays.”
And when he goes home?
“He’ll run around and play like nothing has ever happened,” Mercedes said.
Vega said as long as Ashton continues to receive the infusion, he shouldn’t have any problems.
The Radiology Department adopted the Morgan family for Christmas and delivered them gifts and a holiday meal.
“This has become a family for us,” Mercedes said.
For Rucker, it’s hard to put into words just what this little boy means to the staff.
“I love taking care of kids,” he said. “When Shannon came and said something to us about treating him, I said, ‘Yes, please!’ because he was someone we could take care of and make better. After a rough week, to see him come in brings a smile.”
