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Deciding if you and your child are ready for camp is something many parents and caregivers face, especially if their child has a bleeding disorder. In addition to thinking about the usual parent worries – Will he brush his teeth? Change his clothes? Does he miss us? – many parents think about the health and safety of their child in the care of others.
Rest assured, these are very normal feelings.
Understanding the history, purpose, experience, and potential benefits of camp may make it easier for you to make decisions about camp that are right for your family. Keep in mind – whether you decide to send your child to hemophilia camp is a personal decision. There is no right or wrong answer.
What is Hemophilia Camp?
In 1969, the first hemophilia summer camp was formed in Michigan.1 Since then, more than 50 camps have opened to meet the needs of children and families affected by bleeding disorders. The goal of the camp system is to promote independence, leadership skills, and camaraderie with others in a secure and safe environment.2 If you’d like to find a camp near you, one place to start is The National Hemophilia Foundation and Hemophilia Federation of America both have camp finders, which you can find on their websites.
Camp can be a very special place for children and families with bleeding disorders. Some of the opportunities include forming bonds with other people with a bleeding disorder, seeing their clinicians in a relaxed setting, learning more about their bleeding disorder and developing self-confidence – allowing them to become advocates for themselves and others. It’s a place where kids can be kids, and an opportunity to be with other people with hemophilia, which can make children feel just like everyone else.3
Deciding if You’re Camp-ready
Recognizing it’s not always an easy decision, let’s also explore some of the common questions you might ask yourself when deciding if your child is ready for camp.
1. Is my child ready to be away from home
One of the biggest elements parents wonder about is the idea of venturing away from home – and for many, this might be for the very first time. For the child, this might be their first sleep-away experience, or maybe just the first time sleeping far from home. For the parent, this might be the first time being away from their child overnight. These are big steps, and having some reservations is completely understandable.
If you think back to any time you first entered a new environment – like school, or a new job – just getting to know your way around and learning the way things work in a new place can be tough. Camp is a new experience too.
2. Will they fit in socially?
There are many social elements that parents think about like being homesick, wetting the bed, being afraid or uncomfortable in the outdoors, along with the need to attend summer school or other community activities like scouts or church.
So, what is the social experience at camp really like? Some of the social opportunities include4:
- Meeting other children with bleeding disorders
- Learning new skills (for example, swimming, art, getting along with others)
- Learning independence and confidence
- Becoming role models for new or younger campers.
3. But what about the health of my child?
Some of the hesitations many parents have are:
- Child won’t get appropriate treatment
- Treatment is different from others or has a set routine
- Child might get sick, hurt, or injured
- Parent usually treats the child
- Caregiver and/or child has expressed anxiety.
Again, these are all very normal concerns. Make sure that you speak with the camp staff and your healthcare treatment team to make sure that you are comfortable with the procedures in place.
4. Is my child ready to self-infuse?
Self-infusion may be one of the biggest areas of concern for families trying to decide if camp is right for them, but it’s also the area that shines most brightly in terms of the potential of camp for children with bleeding disorders. Self-infusion can be a huge part of a camper’s experience, with lasting and significant benefits, such as independence, self-confidence, and self-reliance.
However, not all children may be ready to self-infuse, and that’s OK. It’s a decision that should be made by the family in consultation with your child’s healthcare team. Talk to the camp staff and your healthcare team about any of your concerns.
5. Are we ready to be apart?
Many parents have concerns being away from their child, but camp can be a place where a child can find a strong sense of independence. For some of these kids, camp may be the first time they’ve ever been able to pick out their own clothes or choose what they want to eat. It’s a place to learn how to make those kinds of choices and decisions. To try new experiences and set their own boundaries.
Camp often provides that same feeling for a child who is exploring a bigger world than they might have ever known was out there. It provides a platform for new experiences to the youth who are looking for the tools to live a strong, independent life while living with hemophilia.
Camp is designed to give children with hemophilia and other inherited bleeding disorders a special and safe place to spend part of their summer and have fun, but remember, whether you decide to send your child to hemophilia camp is a personal decision for your family. There is no right or wrong answer. For additional information and resources, a great place to start is by reaching out other parents, campers, and camp counselors to hear their first-hand experiences about the camp system.
You can also reach out to your local Sanofi Genzyme Community Relations and Education, or CoRe, Manager, who can provide education about the camp system, and share resources for additional information.
© 2021 Genzyme Corporation. All rights reserved. MAT-US-2105641 v1.0 06/21
Hemophilia Summer Camps
2 ACA REPORT – Youth Development Outcomes of the Camp Experience
Accessed 11/5/2020 (full report enclosed)
Hemophilia Summer Camps
Hemophilia Summer Camps