As summer comes to a close and the idea of back-to-school begins to percolate in the minds of parents everywhere, the seemingly endless commercials and mail flyers on the topic can be a cruel reminder of a world that often feels very far away for parents in the rare disease community. Navigating the school system often looks different for these families. Some don't get to see their children advance grade-to-grade, others struggle to have teachers understand an Individualized Education Programs (IEP), while some children may have attended school in the past but no longer do so today, and others are missing a child who never had a chance to attend school.  

Education for Children Living with Rare Diseases 

We asked parents in the NTSAD rare community how this time feels for them, and what factors they navigate in their everyday lives regarding the school system. Yasmina, whose daughter, Lily was diagnosed with juvenile Tay-Sachs told us,

"We decided homeschooling was best. We realized gains would not happen, so Lily learns through play and various therapies. We have a statewide scholarship to keep Lily learning at home which also helps provide those therapies."

Individualized Education Plans (IEPs) are federally mandated by the Individuals with Disabilities Education Act (IDEA), and beyond the threshold, vary by state. Find more information on educational support at the IDEA link above. 

Jill, whose son, Michael is also living with juvenile Tay-Sachs explains,  

"My son, Michael, has juvenile Tay-Sachs disease. There was a time when he attended school alongside his peers. Then came a season of shortened days, increasing supports, and difficult decisions. Today, he receives homebound services because his body can no longer tolerate a traditional school day.

Back-to-school season reminds us of the changes to the milestones we once expected. We don't measure progress by moving from one grade to the next. Instead, we celebrate things like having enough energy for therapy, participating in an online lesson, or sharing a laugh with his teachers. Education can look very different for children with rare diseases. It may happen in a classroom, in a hospital room, or in short moments between therapies and medical appointments. Every version is valid. 

To educators, when you welcome a child with a rare diagnosis, please remember these families are carrying far more than a backpack and school supplies. We are navigating medical uncertainty, changing abilities, and anticipatory grief. At this stage, my greatest hopes for Michael are that he can participate safely and that he enjoys the experience. Your willingness to listen, learn, and adapt means more than you know. We may not follow the traditional school path, but our children are still learning, growing, and leaving an incredible impact on the world." 

Support for Grieving Children and Families 

 Zach, whose son, Phillip was diagnosed with infantile Sandhoff noted,

"We got a recommendation quickly for Early Intervention and they did at-home therapies for Phillip. That was a great experience for Phil and us! Phillip never had the opportunity to go to school, however, now it has been hard watching kids his age group entering Kindergarten and imagining him going to school."  

Zach, whose older son, Oliver, who is neurotypical also shared,

"Every year we try to send a note to his teacher explaining his brother Phil. We want to give the school an opportunity to understand Oliver's perspective on sibling loss. He still includes his brother Phillip in pictures and stories, and we don't want anyone to be blindsided or to question him."

More information about childhood grief support for sibling loss focused on back-to-school support can be found at The Dougy Center, The National center for Grieving Children and Families.  

Subsequently, for those who are bereaved, missing your child and watching as those around you celebrate their children advancing year after year can take an emotional toll as yet another secondary loss. Many families find comfort in creating personal rituals such as donating supplies to a classroom or child of the same grade their child would have been in, lighting a candle in remembrance on the first day of school, sharing special memories, or writing a letter to their child, envisioning them in the current day.  

You Are Not Alone 

Whether you're navigating school meetings, adapting to a new normal, or grieving a loss, you don't have to do it alone. NTSAD is always here for you. If you'd like to connect, please reach out to NTSAD's Director of Family Support, Becky Benson, at becky@ntsad.org. We're here to listen, answer questions, and help you find resources that meet your family's needs. However you navigate the back-to-school season, we hope you give yourself grace as you find the path that is right for you and your family.

Written by NTSAD's Director of Family Support, Becky Benson, with contributions from Yasmina, mom to Lily, Jill, mom to Michael, and Zach, bereaved dad to Phillip and healthy sibling, Oliver.