CAMP LEJEUNE, N.C. -- Getting 2-year-old Oxlee ready for daycare is the first task in Cynthia Rodriguez's morning routine. Packing his lunch, dressing him and making sure his hands, elbows and feet are bandaged are what she does every day for her son. Children usually don't have to worry about getting blisters unless they touch something hot or play too long on the monkey bars. Oxlee is just like most kids his age, with one exception: he has had Epidermolysis Bullosa, a rare skin condition which makes his skin as fragile as paper. If rubbed, his skin will either blister or tear away. Blisters and scrapes are part of most people's childhoods, but for Oxlee, it's part of his everyday life.
"We were at home one day, (Oxlee) was playing and he got excited and ran over to the couch I was on," said Cynthia. The Shamong, N.J., native, continued, "He fell onto the couch, but caught himself under his armpit. The couch ripped the skin out from under his armpit. If he'd run into something rougher, he would've been really hurt."
Having a child with a condition as severe as Oxlee's makes it hard for Cynthia and her husband, Cpl. Oxlee Rodriguez Sr., an ammunition technician with the 22nd Marine Expeditionary Unit, to find safe places for Oxlee to play outside or even a daycare capable of providing special care.
The Exceptional Family Member Program, a program designed to provide assistance to family members with special medical, emotional, physical or educational needs, is helping Cynthia, her husband and 18 other parents by hosting Camp Special Time on a quarterly basis. The camp is designed for category four exceptional family members of all ages. Category four is the most severe level, which requires the family member to be stationed near a major medical center.
"This is the only camp of its kind where the Marine Corps has ever offered any type of respite care for families in the Exceptional Family Member Program, and it is at no cost to the families," said David J. Reintjes, the exceptional family member coordinator for Marine Corps Community Services here. "(The camp) provides families a rare opportunity to send their child to a two day camp that provides for the developmental needs of each individual child."
The two-day camp began Oct. 24 in the morning with the children meeting the counselors, who come from a wide array of backgrounds. The 19 staff members, who rotate on and off during the weekend in shifts, range from registered nurses (who are always at hand if needed to attend to the children) to volunteers from the Single Marine Program. Special guest volunteers include a face painter to a musical therapist to a physical therapist. Each brings with them their own skills to make the camp special for the children.
"I just love spending time with the kids. What little time it takes from my life to help out here means so much to these kids, who aren't really used to an older person spending time with them," said Lance Cpl. Kyle R. Hanson, a heavy equipment operator with 8th Communications Battalion. The Jacksonville, Fl., native, continued, "I've worked with kids who have special needs most of my life. When you're spending time with them and they learn something new, their eyes light up. Understanding something means a lot to them, and it makes all my effort worth it."
Hanson isn't the only volunteer at the camp. The camp is seen as a great opportunity for nursing students who want experience with pediatric medicine to get an experience of what it's like to work with kids.
"For the students, this camp is a great opportunity for them to observe different developmental disabilities. It also gives them great hands-on experience with children and it's for a good cause," said Kay Kanoy, a faculty member at the University of North Carolina, Wilmington, N.C., and native of the town. Her students agree it's a good experience.
"It takes a lot of patience to deal with any child. A child with special needs takes even more patience, so I'm glad we can give the parents a break for a little while," said Virginia B. Chafin, a senior nursing student at UNCW. "This gives us a great opportunity to see what working with kids is like, and lets us know if pediatrics is something we'd want to pursue."
The registered nurses who are always on hand at the camp bring the most needed skills to the camp, and are the ones who keep it going.
"We started planning the activities with our first Camp Special Time, and since then, it's evolved into this, and it keeps getting better with every camp," said Angie W. West, a registered nurse with New Hanover Regional Medical Center. "We take the care sheets each child's parents fill out and research their conditions and special needs. Then we prepare a condensed fact sheet for all the volunteers on all the kids. This way they know exactly what the child can and can't do, medication they need, and how to comfort them if needed."
The camp has the potential to be an ongoing project with the possibility of spreading to other military bases.
"Right now, this is the only camp of its kind anywhere in the military. If we can get the volunteers to support it, we can have it more often and open it to more kids," said West. "We're hoping they'll be enough interest in the camp to encourage people to volunteer their time for it. Then it can keep going."
As for Oxlee's experience, his mother was very pleased.
"I thought it was great, Oxlee didn't want to leave. The people there covered all the bases," said Cynthia. "My husband and I went to a spa, shopping, then a relaxing afternoon at home. This is definitely something I'd like Oxlee to do again."
For further information on Camp Special Time, the Exceptional Family Member Program or to volunteer, contact David Reintjes at 910-451-9372.