When Distance Doesn’t Matter
“When Lillian leaves camp she is always more confident and self-assured. No matter what is going on with her Mito, Lillian has a sense of peace and joy after camp. Even though we miss her terribly, we always feel guilty making her leave her most favorite place in the world.”
An estimated 2,463 miles separates Camper Lillian, age 13, from Camp Korey, the place she refers to as having “unexplained, whimsical energy, where she feels safe and happy.” Lillian travels from Louisiana for the opportunity to go to a place where she feels she belongs, and doesn’t need to explain what she is going through. It’s at Camp Korey where Lillian’s diagnosis of mitochondrial disease takes a backseat to the joy and adventure of childhood.
According to MitoAction, mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fail to produce enough energy for cell or organ function. Mitochondrial disease is an inherited chronic illness, causes debilitating physical, developmental, and cognitive disabilities. It is estimated that 1 in 4,000 people has Mito, Camp Korey is one of the few places in the US offering program opportunities for children with mitochondrial disease. “Lillian’s condition has gotten progressively worse since her diagnosis at 6 years of age. Despite her happy demeanor, it is becoming more and more challenging to maintain her energy levels and live the life of a typical 13 year old,” explains Lillian’s father Paul.
Lillian first made the journey cross-country six years ago just after her diagnosis. Initially the family was nervous and unsure that anyone could meet all of Lillian’s needs, but that feeling changed after arriving at Camp Korey and experiencing their first check in, complete with an extensive medical check where volunteer doctors and nurses met one-on-one with the family to review all of Lillian’s needs. “Our kids are challenging to care of and it’s hard to trust others with our most valuable blessings,” states Paul. “We live with a fear that most families don’t because this disease can and will turn on a dime. Camp Korey respects and loves our children with the utmost concern and compassion. They have all the systems in place to protect our children while showing them what pure joy and freedom from physical and medical limits truly feels like.”
After six sessions at Camp Korey, the changes in Lillian are similar to many other summer campers who attend Camp Korey. “Lillian is definitely more independent and active in her own care,” explains her father, “She is able to go into social situations and know that she can manage her needs. It’s an overwhelming challenge to be a child that has to balance social involvement and obvious medical needs that can’t be hidden from others. Lillian stands out among her peers but now it’s because of her strength and not because of her medical condition. We feel that she has acquired this through her time at Camp Korey. This is something we could not have accomplished without Camp Korey.” Lillian herself tells others how Camp Korey has helped break her out of her shell, and she recognizes the same thing happening to other campers around her. “It’s really hard to explain, you don’t realize it’s happening,” she states.