The Overlooked Impact: A Grandmother's Perspective on Rare Disease

When we talk about the impact of rare diseases on families, our focus is often (and rightly) on the child and their parents. But there’s another layer of emotional labour that often goes unseen—the extended family. As a grandmother to a child with Congenital Hyperinsulinism, I’ve come to understand this all too well.

From the moment of diagnosis, I’ve lived with a two-level worry. My son and daughter-in-law have been completely devoted to supporting their child—managing the condition, attending countless medical appointments, and responding to the many uncertainties that come with it. My concern has been for both my granddaughter’s health and my children's wellbeing.

There have been so many sleepless nights—not just for the parents, but for me too. I worried about how exhausted they are, how their lack of rest affects their health, their jobs, and their emotional resilience. At the same time, I carry the constant concern about the risks of low blood sugar episodes, and the long-term effects this may have on my granddaughter’s development and future.

As a close-knit family, these concerns evolve as she grows. Every milestone brings a shift in worry—first steps, early words, nursery... and now, this September, starting school.

I know her parents will be navigating the complexities of education—explaining her condition, discussing learning needs, and seeking the right support. And I will be there in the background, quietly worrying, hoping, supporting and cheering them on.

But how wonderful it would be—what a relief it would be—if a national framework already existed in schools to support children with rare conditions. A structure that reassures families that their child’s needs will be recognised, understood, and met. A system that ensures no child is defined by their diagnosis, but empowered by their potential.

For families like ours, that wouldn’t just be policy—it would be peace of mind.