Inspired by Will’s mom, Jen, a member of the Patient and Community Advisory Council.
As fall approaches, many families are preparing for the back-to-school season. For parents of children with complex lymphatic anomalies or a lymphatic malformation, this time of year involves more than just backpacks and lunchboxes—it’s about ensuring their child’s medical needs, educational gaps, and emotional wellbeing are understood and supported.
Our family has developed a few key routines to help our son Will, who lives with a rare disease, transition smoothly into each new school year. Whether your child is newly diagnosed or you’ve navigated this path for years, we hope our experience offers some guidance and encouragement.
1. Start with a Meeting
Before school starts, we always schedule a meeting with the school principal and Will’s new teacher. This meeting is our opportunity to:
- Share a bit about Will’s medical history and current condition
- Highlight any gaps in learning caused by hospital stays or fatigue
- Request additional support materials to use at home
Starting the year with this open dialogue creates a team mindset—it helps everyone feel prepared and sets the tone for collaboration.
2. Make the Rare Visible
Every year, Will creates an in-class presentation for Rare Disease Day. He’s made videos about his journey and condition, and the class participates in activities that foster empathy and awareness. This empowers Will to take ownership of his story and helps classmates understand and embrace what it means to be rare.
These presentations aren’t just educational—they’re community-building. They give children the tools to be compassionate peers and help reduce stigma.
3. Ensure Staff Awareness
Our school has a form that’s posted in the staff room. It outlines:
- Will’s condition
- His medications
- What teachers and staff can expect in terms of behavior, absences, or physical needs
This ensures that everyone who might interact with Will—from gym teachers to substitute aides—is aware and informed.
If your school doesn’t have a system like this—depending on your country’s laws or regulations—make sure key staff members, especially the school nurse, are aware of your child’s condition, medications, and what to do in an emergency. Open communication can help prevent confusion and ensure your child receives the care they need when they need it.
4. Leverage Helpful Resources
If you’re not sure where to start, the LGDA offers practical tools for school advocacy:
- How to write a school introduction letter: A guide to clearly communicate your child’s needs
- Tips for advocating at school: Insight on IEPs, 504 plans, and fostering understanding
5. Trust Your Instincts—and Celebrate the Wins
You know your child best. Don’t hesitate to advocate, follow up, or adjust accommodations as needed. And remember to celebrate the small victories: a great day at school, a kind word from a classmate, a breakthrough in learning.
Meet with the community on August 26 @ 7:00 pm ET via Zoom and hosted
by the Patient and Community Advisory Council.
Going back to school with a rare disease isn’t easy—but it is possible with planning, teamwork, and heart. Whether it’s sharing your story, coordinating with staff, or simply checking in daily with your child, every effort helps build a more inclusive and supportive learning environment.
Have questions or want to share your own back-to-school tips? We’d love to hear from you.
