Today marks Rare Disease Awareness Day, and coincidentally (or not), it falls precisely on Family Day. Awareness Day is, in essence, another opportunity for people to get a closer look at the world of parents, families, and children living with rare syndromes and diseases.
But for me, it also raises an important question: Why do we still have to fight just to be recognized as a “family”?
My son, Itamar, is six years old. At three months, he was diagnosed with a rare genetic syndrome called Cornelia de Lange. We didn’t receive an instruction manual; we had no idea what our lives would look like from that day forward. But one thing was clear – we are a family, no matter what challenges come our way.
We live just like any other family, waking up in the morning, getting the kids ready for daycare, going to work, visiting friends, and enjoying leisure activities.
But alongside all of this, we live another life – a life filled with bureaucratic struggles, battles for appropriate educational frameworks, proving eligibility, and asserting our belonging. A life where society still sees us as a “special family” instead of simply a family.
Navigating the education system with a child who has special needs is an endless journey. When Itamar was little, the struggle to find a suitable framework for him began very early.
As soon as we realized that we could not integrate him into a regular daycare, the race between various entities began – medical committees, the municipal education department, therapists, and social workers – each with their own regulations but no clear, unified solution.
There was no spot available in a rehabilitative daycare close to home, and we waited months before finally securing an appropriate setting for him.
Transitioning to kindergarten was no less complicated, and we had to fight for two years just to ensure that Itamar could study in an environment that met his needs.
Now, as we face his transition to elementary school, we find ourselves in the same reality once again – complex bureaucracy, regulations that do not accommodate unique cases, and an entire system that is not built for children like him.
It is exhausting. It is frustrating. It demands strength from us as parents – strength we don’t always have – but we persist because we have no choice.
Every form that gets approved, every committee that we pass successfully, every confirmation we receive – each is a small victory along this long journey.
Ongoing challenges
The challenges do not end with the education system. In public spaces, it feels like a continuous battle for acceptance and belonging. Playgrounds that are not accessible, entertainment venues that are not prepared for children with disabilities, and people who sometimes stare with curiosity or even pity – all these create a sense of alienation. Every outing requires meticulous planning – ensuring the location is accessible, and confirming there are no obstacles to our basic rights. We do not hide Itamar, his syndrome, or our family.
More than anything, we want Itamar to be able to play with other kids at the park, and we see that it happens. It happens most often when other parents see us as a regular family, and dare to approach, get to know us, talk, and ask the questions they and their children are curious about.
Sometimes, simply reaching out and asking a question – showing that we are open to conversation – is enough to break the barriers between the “neurotypical” world and the “special” world. That’s all it takes to foster inclusion.
Over time, I realized I couldn’t fight alone. Three years ago, I discovered a leadership and activism program called “Link 20,” which provides young people with and without disabilities – and parents like me – with tools to amplify our voices in this unique world. I learned how to advocate for real change, influence policy, and most importantly, ensure that our voices are truly heard.
Through this, I understood that our struggles are not just personal challenges but part of a broader societal shift that needs to happen. I gained the tools not only to fight but also to create change, and I began to see how a personal struggle can evolve into something with a wider impact.
I want to believe that in the future, when my son grows up, he won’t feel different when he plays at the park, sits in a classroom, or ventures into the world. I want us to be just a regular family – without puzzled stares, without having to explain ourselves, and without endless battles just to receive what we rightfully deserve.
Family Day and Rare Disease Awareness Day coincide on the calendar, and to me, this is an important reminder: Every family is a family, no matter how they came to be.
I call on all of us to see rare conditions as part of the human diversity, to view us like any other family – with love, with challenges, with joyful moments, and with one simple aspiration: to be part of the social fabric without special labels.
So this year, as you celebrate Family Day, remember that we are here too. We are not asking for special treatment – just for you to see us exactly as we are: a happy, laughing family.
The writer is head of Impact at Link 20, a program by Edmond de Rothschild Partnerships.