At summer camp, Stephen Nielsen is just one of the guys … telling jokes, talking with friends, fishing, boating, and doing archery.
“Most kids just want to be seen as normal and a part of the crowd. But you don’t always get that when you have something different,” said Diane, Stephen’s mom.
Stephen’s mitochondrialRelated to the mitochondria. disease makes him different from most – except at camp.
“He has a great week of young adults and teens who treat him like every other kid. They treat him with respect, they listen to his funny jokes,” said Diane. “When we come back to pick him up from camp, he’s empowered with positive thinking and confidence.”
Diane thought camp would be a place to get to know other kids with Mito. “But for Stephen, I think the connection he looks forward to most is the counselors. Some come back every year.” Stephen just finished his sixth year at Camp Korey.
The counselors and volunteers are always positive and are exceptional, Diane said. “When the counselors talk to the kids, they get on the same level and help the campers feel comfortable,” she said. “That’s wonderful.”
The campers get a lot of one-on-one time because the ratio of counselor to camper is incredible, said Val, Stephen’s dad.
“I see his self-esteem grow,” Diane continued. “It’s like he’s been given wings.”
Stephen, 12, has mitochondrial trifunctional protein deficiency, a metabolic disorder of the fatty acid oxidation. He can’t break fat down into energy so he follows a strict medical routine, which includes medicine three times a day, a specially made medical drink that he consumes throughout the day, and a cornstarch mixture at night. He can only have very small amounts of fat in food.
He fatigues easily and has ongoing core muscle weakness. If it’s hot and he has a lot going on, “he’s running on two batteries instead of four,” Diane said.
The Nielsens wondered if they’d ever be able to send him to any kind of camp because of their fear of other people having to take on his medical routine. “We were scared to put him in the care of other people,” Diane said. Added Val, “Would he be cared for like we would care for him?”
But Camp Korey silenced those fears. The medical staff and dietitians there have been amazing in working with the Kent, WA family regarding Stephen’s needs.
Stephen said that when he is at camp, his sisters -- Laura, 21, Kathryn, 19, and Rebecca, 16 – used to get jealous. But they also realize it means an opportunity for them to get some mom time. “I had forfeited a lot of other sibling mom time caring for Stephen, particularly when the girls were young,” Diane said. “I don’t want to lose my girls while trying to save my son. It’s hard to balance. When the opportunity came up for Stephen to be taken care of, I was grateful for the time to spend with my daughters.”
Diane and Val know that at camp Stephen is in wonderful hands.
“Camp Korey staff and volunteers are some of the most outstanding people you will ever meet,” Diane said. “All families that participate have many opportunities to be lifted and inspired to rise above all the difficulties life has thrown their way.”
