Pomp & Circumstances: Purvis seniors will celebrate graduation at homeBy BETH BUNCH,
The last of Melissa and Tony Clark’s three daughters will graduate with the Purvis High School Class of 2018.
Twins Mallory and Meaghan will graduate, but won’t have the opportunity to make their way down the ramp at Reed Green Coliseum on May 26 with the rest of their classmates. The girls haven’t been able to enjoy the traditional classroom setting and extracurricular activities as have the other students in their class for a number of years.
The girls, along with their older sister, Lauren, who graduated from PHS in 2015, suffer from a rare genetic disorder known as epidermolysis bullosa. EB is characterized by the presence of extremely fragile skin and recurrent blister formations, resulting from minor mechanical friction or trauma.
About 200 children a year are born with EB, which isn’t contagious. Those with EB are sometimes called Butterfly Children because their skin is as fragile as butterfly wings. There is no cure or treatment. Currently, there are about 30,000 people with EB in the United States.
The girls have been able to keep up in school through the Lamar County School’s District Special Services Dept. that offers a Homebound Program. The program is for students who are usually too ill to attend school or have particular circumstances which keep them out of the classroom.
Melissa, a nurse, didn’t realize when the girls were born just how busy her life would become.
“After a while, it became very evident,” she said.
For the most part, the care of the girls and their needs has fallen to their mother. “I’ve done it all myself as far as hands-on care,” she said. “Family has helped with doctor’s visits and other things.”
While life can be complicated at times, Clark said most of her time away from work is spent “loafing off” with the girls.
But as far as time away, that’s not every really been successful, until now.
For Mother’s Day, a friend gifted Melissa and Tony with a two-day trip away to enjoy time to themselves, allowing them to do what they wanted to do.
Tony’s mother, Martha, sings the praises of her daughter-in-law.
“She’s made so many sacrifices and is just a wonderful mother to Lauren, Meaghan and Mallory. She deserved the time away,” Martha Clark said.
People who suffer from EB have a hard time dealing with heat and suffer from blisters, much like people do when they wear new shoes, but on a much larger and intense scale. The blistering sometimes results in scarring.
Clark explained that the girls lack collagen in their bodies which helps the skin slide back into place once it has been stretched.
The Clark girls have webbed fingers, toes and even their tongues are webbed to the bottom of their mouth.
Because even the slight slightest touch or friction can cause the skin to break, thus resulting in painful blisters and open wounds, events such as graduation become difficult.
To replace the graduation they will miss, the girls will celebrate graduation at home – complete with caps and gowns, family and friends.
The heat and stress of walking or using a wheelchair were all factors that played into the decision to celebrate at home.
The family tries to maintain as normal a lifestyle as possible, according to Melissa.
But just because the twins are graduating doesn’t make things easier. “They want to go to college too,” said their mom. “Lauren expressed an interest in law school when she graduated.”