Year after year our team has the privilege of witnessing the transformative power of summer camp season. We see the power these therapeutic programs have for young burn survivors, for children with life-threatening or life-altering illnesses, and for kids with a variety of needs and backgrounds. For many youngsters, camps are a summer sanctuary — a place where they can forget any troubles and make summer memories.
From the moment we learned I was pregnant, all we found ourselves wishing for is that our baby would be healthy. Our wish became more intense at 21 weeks’ gestation when we learned that our first baby was measuring quite small and likely had a form of dwarfism, or skeletal dysplasia.
It would be nearly four months and a couple of respiratory scares and hospital stays before we would have a confirmed diagnosis. Eventually, we would learn that our son, Kahlial, had a rare condition called Spondyloepiphyseal Dysplasia – Congenita, commonly known as SED or SEDc.
SED is not a hereditary condition; we have no family history. Rather, it’s caused by a random mutation in the gene that codes for type II collagen. The list is long, but basically it affects the collagen and connective tissues in the bones, eyes, and other parts of the body, with the most obvious difference in a person with SED being their short stature.
With a diagnosis, we finally had some answers, knowledge about common complications, and what to watch for as he grew. We also quickly learned that there were only a handful of doctors in the world, much less the country, who had any real experience with our child’s condition. So we found ourselves in this surreal situation where we were traveling to hospitals in other states, flying across the country to get the care and surgeries our son needed. It was a lot. But you just do what you need to do to get your child the care they need.
Early on, we connected with Little People of America, a national nonprofit organization that provides support and information to people of short stature and their families. I can’t say enough good things about this organization, the community, and the Medical Advisory Board. Especially in those early years when our focus was largely on his medical needs and increasing our overall understanding of his condition and dwarfism in general. I’m afraid he ended up with a book of medical records instead of a baby book.
As we moved toward school age, making friends and building a supportive, interactive community around him (not just a stellar medical team) became a priority. We were fortunate enough to find Camp Korey, a nonprofit that provides year-round adaptive programs for children and their families living with life-altering medical challenges.
Kahlial Finds Camp Korey
Earlier this year, Kahlial attended the Teen Leadership Retreat at Camp Korey, where fellow kids with medical conditions come together in service, leadership, and connection-oriented programming to learn how to support other youngsters. He’ll now be able to volunteer his own time and give back to an organization that has helped him navigate being a kid with differences in a safe and supportive environment, creating lifelong bonds with peers that look like him and who have an unspoken understanding of each other’s struggles.
Kahlial was beyond thrilled when the opportunity arose for him to get back to camp, and even more thrilled at flying to camp on his own. Not only would a flight with AFW be a huge time and cost savings for us, but it would also be an incredible experience for Kahlial and an opportunity for some independence.
This camp experience wouldn’t have been possible without Angel Flight West, and he certainly got the red-carpet treatment from Volunteer Pilot Trevor Moody and Mission Assistant Dimitri Nikonov. I get sappy just thinking about how much these incredible organizations have meant to our son and family. We are beyond grateful.
In Kahlial’s Own Words
Camp Korey is such a magical experience for everyone — staff and campers alike. We do things ranging anywhere from food fights to knitting! I feel empowered being surrounded by people who look like me, and I appreciate how inclusive the program is. Being at camp is almost a complete escape from the daily hardships that people of short stature face.
My Angel Flight West experience was awesome! My pilots were so easy-going and made me feel comfortable on the plane. It all really made a difference because it allowed for a quick, safe, and efficient transport to camp.
It was also nice because I had recently had a total spinal fusion, and sitting in the car for a long time wasn’t comfortable. I’m glad I didn’t have to spend nearly 20 hours driving in the car to participate in the camp for those two days.
I’m really grateful for everything these pilots and angel flights do. I hope I get to do it again for the week-long camp this summer!
From Kahlial’s Volunteer Pilot Trevor Moody
Flying Kahlial to Camp Korey stands out as a very special mission amongst the many special missions I’ve had the chance to fly with Angel Flight West. It may have been Kahlial’s determination and confidence that were so evident when flying with him. It may also have been the love and devotion of his parents that were evident from my first communication with them, and also the concern I sensed at having their son’s transport entrusted to a couple of pilots they’d never met. The flight itself was very smooth and saved the family a challenging nine hours of driving. Kahlial had been to Camp Korey a few times before, but this trip was different and particularly important to him as he was now stepping up to leadership training where he would learn how to help younger kids navigate the challenges they’re facing. I have no doubt that Kahlial will excel in his new responsibility, and I was honored to be able to help him achieve this new role.
