Christopher Courtney spent his 13th birthday a bit different than the average teenager. The Oakdale Junior High eighth grader began his 13th year last Saturday, flanked by family and a community which has greatly impacted his young life – Make-A-Wish.
On Saturday, Aug. 19, Christopher and his family were participants in the annual Wish Walk hosted in Sacramento. It’s an event, his mom shared, that he wanted to be a part of well before knowing the great impact this not for profit would have on his personal life. Earlier this summer, Christopher and his family of eight spent five jam-packed days in Hawaii as guest of the Make-A-Wish Foundation.
“I want to help kids like me,” Christopher said of his fundraising and interest in the Wish Walk.
“Kids like me,” however, begins and ends with Christopher’s Wish Kid title; the 13-year-old lives daily with a neurodegenerative disorder not yet diagnosed. Its symptoms have been identified most closely to that of Huntington’s disease, yet that has been ruled out. Most recently he became a part of the Undiagnosed Disease Network, UDN, run by the National Institute of Health via referral from his primary doctor at Stanford Hospital.
“They’re actually doing whole Genome testing now,” mom Stephanie Courtney said, “to test all the genes in the body because they do believe there is an error. They do believe it’s a genetic cause.”
Christopher is one of six children in the Courtney family. The youngest four Courtney children were adopted. Christopher and his two younger siblings share the same biological mother, which makes the testing all the more important. The younger two Courtney children have not displayed symptoms similar to their brother.
“They take only the most medically challenging cases, that other places have not been able to diagnose,” Stephanie said of the UDN.
Stanford is one of seven universities partnered with the UDN on cases such as Christopher’s. Stephanie stated they have a 45 percent success rate.
“They know it’s genetic, but they don’t know what,” she said.
For five days in July, however, the Courtney family was able to take a break from research, testing and doctor’s appointments. They were able to place their toes in the sand, play in the ocean, take in some sights and experience first class treatment by way of Make-A-Wish.
It was five days filled with firsts for the Oakdale student. His first plane ride out of state, first time in a cockpit, first time to Hawaii, first time drinking from a coconut, first time staying in a hotel suite; the list goes on.
“I just can’t say enough about Make-A-Wish,” Stephanie said. “They think of every little thing, the smallest of details. They have so many kids that want to go to Hawaii, that they actually have a chapter there that helps coordinate all of this.”
The Courtney’s trip to Oahu, Hawaii included: a five night stay at the Sheraton Waikiki, a dolphin experience for Christopher and his mom, a hike up Diamond Head and a number of other memory making experiences.
“I’ve never been to Hawaii before and I always wanted to,” Christopher said of his wish, noting the dolphin experience as his favorite. “I was nervous because I thought it was going to be in the ocean at first.”
Once he saw the wade pool and dolphins, those nerves were quickly at bay. During the dolphin experience, he was able to feed, pet, kiss and ride the dolphins. It was an experience the rest of the family was able to witness from poolside and share in his joy as it unfolded.
“After everything he’s been through and still with the uncertainty … to see him get the wish granted,” Stephanie said of enjoying the memorable family vacation. “Also for our other kids as well, it was just really something special.”
