What Inhibitor Family Camp Means to Us:
It Just “Clicks”
Published: LifeLines for Health, vol. 4 (Winter 2014)
A Father’s Words
by Wayne Camarro
This is the second year my family has attended Inhibitor Family Camp at Victory Junction Camp. My wife Jackie and I went with our sons Jacob, age 9 who has Hemophilia A with an inhibitor and our son Harrison, age 17. Harry has Lenox Gastau Sydrome, which means he is non-ambulatory, non-verbal, is developmentally impaired and has a seizure disorder.
Attending camp gives Jake and our whole family a chance for fun, education, relaxation and friendship with other families that are or have gone through some of the same experiences with hemophilia and an inhibitor that we have. We see it as a mini family vacation where we get to see old friends, make new ones, share experiences, learn new ways to cope, relax and ease pain.
It gives us a chance to see Jake playing with kids who understand him and all that he has been through. To see him make friends so fast warms my heart. There is no awkward adjustment period for them to bond, they become fast friends in minutes and are off and running to the next fun activity.
”There is no worry that he’s not going to fit in or have other kids fear him or label him as different due to his condition. He just ‘clicks’ with the other kids.”
Inhibitor Family Camp gives Harry a chance to experience cool activities like archery and horseback riding for the first time, that he might not have had a chance to do otherwise because everything is adapted! We have taken Harry to traditional campgrounds previously, but they tend to be over crowded and are typically not equipped to handle kids with special needs. At Inhibitor Family Camp the staff is very well versed in caring for kids of his ability level, which makes us so much more comfortable and makes it so much easier for him to participate. You can see it in the huge smile on his face!
For us as parents, Jackie and I get the benefit of attending informative sessions presented by medical professionals. Open group “jam” sessions with the other visiting parents are a favorite of mine. We get to discuss topics such as how our kids’ siblings are dealing with this illness. Having such a varied group together in one place and still being able to relate to each other’s struggles is truly amazing and not an experience that is easy to duplicate.
We really look forward to getting a break from the day-to-day challenges of dealing with hemophilia and an inhibitor. No matter how overwhelming things can seem at times, knowing we have our Inhibitor Family Camp experiences to fall back on is huge. We truly appreciate the effort that goes into making this event happen. Our sincere thanks for letting us be a part of the Inhibitor Family Camp family.
A Mother’s Words
by Jackie Camarro
There are many things I enjoy about the CHES Inhibitor Family Camp weekends. I enjoy meeting families from all over the country. I enjoy the feeling of community you get when you know that the people around you understand what you are going through when raising a son diagnosed with hemophilia and an inhibitor.
It’s nice to not have to explain what hemophilia is and then add all that additional information needed to explain the inhibitor too. All you have to do is introduce yourself and say the diagnosis and the conversation has begun. It’s fun to participate in the Serious Fun camp experience too.
My favorite part of camp is interacting with other parents, listening to their story and realizing that we are a community of people with many similarities. I never would have had the opportunity to meet such awesome people and hear such inspiring stories. These stories empower me and give me the strength to continue.
As many parents in the inhibitor family know, there are times that I, as a parent have been worried about my child’s future. It is very hard to see your child in pain or to see him sad because he can’t do all the things his friends can do. It hurts when I see him become angry because of his medical condition.
Inhibitor Family Camp is also great for my son. It’s nice to see him make new friends, laugh, play and do all sorts of fun things that can only be done at a Serious Fun Camp.