Why Play Matters for Children Living with Rare Diseases

Rare Disease Day is a time to raise awareness about rare diseases and learn about their impact on peoples’ lives. So, today, meet pediatrician Dr. Laura Blaisdell, the Medical Advisor for SeriousFun Children’s Network—an organization Rite Aid Healthy Futures is proud to support.

Our partners at SeriousFun provide transformative camp and recreational experiences for children living with serious illness and their families, always free of charge. In this Q&A, Dr. Blaisdell dives into what makes a disease rare, and why play is so important for kids navigating these conditions.

Q: Define a rare disease for us. What makes a condition rare?  

A: What makes a rare disease is how prevalent it is, that is the number of people living with it.

When a condition affects between 50 to 65 people per 100,000 people, it’s considered rare.1 The National Institutes of Health estimates that there are nearly 7,000 rare diseases affecting an estimated 300 million people worldwide. Most rare diseases are genetic in origin.

Q: What are some challenges children living with rare diseases and their families face?

A: The challenges faced by families and children living with rare diseases are multi-fold. First, rare diseases tend to appear in childhood, and it is not uncommon for it to take years to be properly diagnosed. This is often called the “diagnostic odyssey.” Perseverance during this state—navigating health networks with the uncertainty and worry of an ill child—can be daunting and isolating. Second, many rare diseases do not have treatments, so when a diagnosis is finally confirmed, children and families must navigate acceptance and define quality of life to live their fullest and best lives.

Q: What kinds of programs does SeriousFun Children’s Network offer for kids with rare diseases?

A: SeriousFun programs serve kids with rare diseases by embedding medical support into classic camp programming and activities. The magic of what SeriousFun professionals do is in preparing for each child’s medical needs with precision, safely tailoring activities to the abilities of the child with a singular focus on fun. All the while, the expertise of doctors and nurses is seconds away, casually masquerading as camp staff in t-shirts. Kids can play and parents can hopefully take a moment of respite—knowing all medical needs are accounted for.

Q: Why are these programs important for children and families navigating rare diseases? How do these programs support not just the children, but also their family members and caregivers?

A: A child or a family can, necessarily, become defined by their disease. So, SeriousFun provides regular opportunities for kids and families to be defined by something else much more profound — ordinary childhood experience.

At SeriousFun programs, there is a lot more yes than no. There is an elevation of the camper to new heights and challenges. And there is an opportunity for the child to safely develop independence through overnight programming that may not be able to happen outside of a setting like SeriousFun.

For parents and caregivers, an opportunity for rest, travel and self-care can help heal and rejuvenate. And for families who want to experience the magic together, most camps host family weekend programs to create a memorable experience for the entire family.

Q: These programs are designed to be accessible and inclusive. What does that look like in practice? How does that happen? Who is involved in creating these experiences?

A: SeriousFun’s specialty is in designing camp activities in innovative, safe and accessible ways. Our camps have worked with local engineering schools to develop gear that allow any camper to experience the high ropes. Our medical teams have developed and tested safety protocols for camper participation in adaptive ski, swimming and horseback riding programs. SeriousFun pairs its experienced program staff with our medical teams to create safe solutions to allow campers to participate meaningfully and fully in our camp programs.

Q: What is special about the approach to medical care at SeriousFun programs?

A: For many campers with rare diseases, their medical team is front and center in their lives.  At SeriousFun camps our medical teams have developed “medical invisibility cloaks”—allowing us to disappear when all is good and safe—and allow the fun of programming to take center stage. A careful, trained eye is always watching—but it is from a distance to ensure the camper experience of fun and growth takes flight on its own and outside the singular setting of their disease. 

Q: How can people get involved with these programs?

A: You can find the SeriousFun camps and programs near you at SeriousFun.org. You can also follow SeriousFun on Facebook, Instagram, X, or LinkedIn, or join SeriousFun ‘around the campfire’ each month for updates, opportunities, and camp-inspired activities in your inbox!