Real Stories from People Living with Sickle Cell Disease: Phillip Okwo

Phillip Okwo is a former summer camp counselor at Camp Crescent Moon, a week-long sleep away camp for children with sickle cell disease in Pacific Palisades, CA.  For more than 50 years, this camp has helped kids with sickle cell learn more about their condition, coping strategies, and how to stand up for themselves when they are misunderstood because of their disease.

As a young boy growing up with sickle beta zero thalassemia (or HbS beta 0-thalassemia), Phillip was a camper himself.  He started going to camp in San Juan Capistrano, CA, when he was just 6 years old.  “Camp was a place I could go where I never felt alone.  I was no longer the black sheep in my family.  It was a way of just feeling normal.  There were other people there who have sickle cell like me, some who went to the hospital more than me and some who went less often.  The whole spectrum of care was represented.  I learned self-efficacy skills in understanding my diagnosis and general life and survival skills as well,” Phillip said.  When he aged out of the program, he decided to come back as a camp counselor. “I had a cabin full of 8-year olds and they wore us (me and my co-counselor) out. We didn’t get a lot of sleep, but it was a labor of love,” he said.

According to Phillip, “Anyone with sickle cell disease can attend camp, which lasts from Saturday to Saturday. It is an opportunity for kids to feel normal and get to know other people with the condition.  There are so many fun things to do at camp, such as archery, horseback riding, swimming, campfires and songs, talent shows, and treasure hunts.  In addition, the camps provide sickle cell educational programs, where they teach kids a number of things, including how to manage their condition, stay hydrated, eat healthy, dress appropriately to stay warm, and avoid over-exerting themselves.  Most kids tend to start camp when they are 7 or 8 years of age and age out around age 14 or 15.  Many are repeat campers.  According to Phillip, “Once you have the camp experience, it is something you want to do again and again unless you get sick or move away.”

To still involve kids who have aged out of traditional summer camp, new options have become available, including mini-camps with programming focused on transition.  Transition is the process during which young people with sickle cell disease learn to become more responsible for their health and transfer their health care to an adult healthcare provider. These mini-camps are similar to traditional camp, but do not last a full week.  The educational content focuses on navigating the healthcare system, including communication with insurance, specialists, and gatekeepers.

Benefits of Attending Camp

Attending sickle cell camp helps support young people living with the disease in a number of ways.  First, it helps kids learn that they are not isolated and alone.  Second, it gives kids a sense of self, identity, and value. It also helps build self-esteem through activities such as  the talent show, in which kids are able to perform in front of their peers and showcase what makes them unique and special. It teaches important skills and exposes campers to new things. “My favorite thing about camp was archery.  I found places to do it outside of camp and introduced others to it. It [camp] just expands your universe of options,” said Phillip.  Lastly, it helps instill a sense of achievement and independence. “Camp helps you develop a certain sense of independence.  You begin to feel confident that you could leave home and go away to college.  If it weren’t for camp, I’m not sure if I could have done this,” said Phillip.

Benefits of Being a Camp Counselor

When asked what motivated him to become a camp counselor, Phillip said, “In a way it was self-serving, as I just didn’t want to be done with camp.  I didn’t want to give it up.  It was also an opportunity to be an example and to provide mentorship, which is very rewarding.  It allowed me to demonstrate to campers that despite having sickle cell disease, there are no limits.  We [people with sickle cell disease] are living robust lives.  We’re not shackled or restrained. I’m able to let them know what to expect in terms of prognosis with this disease and that they can live full, productive, and rewarding lives if they manage their disease well.”

Phillip recognizes that being a camp counselor has had a big impact on his life.  “It helps me understand and appreciate that there are things in life that are bigger than me and my immediate wants and needs.  It’s a really humbling thing to do.  It’s a way for me to focus on how I can give back to the sickle cell community. Being able to change the morale and outlook of someone’s life is a very powerful thing to do.” And among campers who return every year, Phillip attributes the following changes to having been able to experience camp: “They engage more with others, are more assertive with adults, step out of their comfort zone, are more daring and take more risks, and just tend to have more zest for life.”

Tips for Kids Living with Sickle Cell Disease and Their Parents

When asked what tips he has for kids living with sickle cell disease, Phillip offered the following

• Find your tribe. It will help give you the sense that you’re not alone in this. It’s like the Bible verse, “A cheerful spirit is the best medicine.”  Your mental health, in terms of depression and anxiety, makes the severity of sickle cell disease worse, so your tribe is huge.
• Know your sickle cell algorithm. In other words, know which factors (for example, cold or hot weather) can trigger a sickle cell crisis that are specific to your body and adjust and manage those.
• Transition should be a rite of passage for all young adults with sickle cell disease. It’s more important than other rites of passage in a young adult’s life, such as learning to drive, going to prom, and going to college. It’s critical that you learn to make your own medical appointments. You have to be able to take care of yourself.

When asked what advice he has for parents of kids living with sickle cell disease, Phillip offered the following

• Learn to let go. Don’t be fearful and overprotective.  You want your child to not only survive, but to thrive on their own.
• Your child doesn’t have to be defined by this. Be measured, know what their strengths and weaknesses are, and continue to challenge them.
• Encourage them to explore a bit and take some risks.

Find a Camp Near You

There are camps like Camp Crescent Moon in other states across the country. In Georgia, there is Camp New Hope.  In Texas, there are a number of camps, including shorter, nontraditional retreat-style camps that typically take place over a long weekend.  Scholarships are available to help people who may need financial assistance, and costs are minimized by sponsors.  According to Phillip, “Everyone should have the opportunity to attend camp.  Find a way to make it happen for your child.  Costs can be mitigated or defrayed. Don’t let that discourage you.  Camp informed how I parent and how I manage my own care.  It’s so incredibly valuable.”

Where Is He Now?

Phillip Okwo is a business finance manager and travels between Atlanta and Houston for work.  He is the oldest of three children and both his parents are teachers.  He is the proud father of two children who have sickle cell trait.  Phillip is also active in the Morehouse Class of 2003 Alumni community.