This year for World Down Syndrome Day we visit the topic of loneliness. The core theme, “Together Against Loneliness”, embodies the importance of connection with each other and with the wider community. We all need to feel as if we belong, to be seen, and feel connected. Loneliness is something we all understand in some way, yet for many in the Down syndrome community, it carries a different weight.
One of the core reasons we started the Black Child Down Syndrome (BCDS) project was to help families and those with a Down syndrome diagnosis within the Black community feel visible and connected. By bringing together members of the Black community we aim to help families and those with Down syndrome to feel seen in a world where they are often further marginalised due to both their ethnicity and disability.
We asked the Founders of BCDS to reflect on the theme of “Together Against Loneliness” and what this really means to them as both parents and community activists:
This year’s World Down Syndrome Day theme, “Together Against Loneliness,” hit differently. Because everyone knows what it means to feel lonely. No over-explaining needed. We’ve all been there. So for once, people already understand the starting point.
But what does loneliness look like when Down syndrome is part of your life?
It’s not the same. It’s deeper. Quieter. More isolating than people realise.
I remember that season. Before advocacy. Before community. Before I found my people. It was just me, figuring it out alone. No roadmap. No one who got it.
As a Black mum in the UK, there was another layer, how we were seen, how we were treated, what we didn’t have access to. Then back home in Nigeria, it became something else entirely. The stigma. The silence. The way people look away. Families carrying it all on their own.
That kind of loneliness can swallow you.
But community changes everything. Building Simone’s Oasis. Finding my BCDS co founders. Connecting with other parents, locally and globally. That was the shift. It didn’t make the journey easy, but it made it less lonely.
And that matters.
Because once you find your people, you realise something quickly. You were never meant to do this alone.
Tonye-Faloughi-Ekezie
I feel this year’s World Down Syndrome Day theme deeply in my heart. It is part of our humanity to belong and yet some of us have to fight for this basic human right. To be seen, valued and treated with dignity and respect. The idea that people with Down syndrome and their families are excluded and loneliness is an everyday reality breaks my heart. This is why the theme “Together Against Loneliness,” is so important. Let us be in what our South African family call Ubuntu very loosely translated into “I am because we are”.
Oneness Sankara
Together Against Loneliness feels especially urgent within our community, because for many Black families of children with Down syndrome, isolation can be the norm. It can show up in the absence of culturally competent healthcare, in support groups where no one looks like you, in family gatherings where you don’t entirely feel welcomed and in the many systems that fail to recognise the layered realities of being both Black and disabled.
This intersection often leaves families feeling unsure of where they belong. Our work at Black Child Down Syndrome exists to challenge that silence, to build spaces where Black children with Down syndrome are centred and celebrated; where their families can connect, because community replaces isolation. It’s crucial that we all recognise the importance of creating pathways, for all humans to feel connected and included, in society.
Marsha Martin
I don’t think I ever knew isolation until I became a parent to a child with Down syndrome. I guess this in general, makes me extremely fortunate. When you have a disabled child, especially one with a visible disability, from day one there are questions, comments and unhelpful, often hurtful statements that people seem to offer up, as if the diagnosis itself is not hard enough.
Often people are forced to become a shell of themselves, hide away and quietly get on, all the while struggling with intense loneliness and isolation. I started Panda’s Tree – Black Down Syndrome UK, because I could see the void within our own community. Where both culture and society dictate that we often toughen up, stop complaining and get on with it; it was evident that some individuals and families were often forced into isolation. This was magnified by the way the wider society interacted with us. There is so much that we have to cope with, not only in the early years, but for life. Often we self-isolate as a protective measure.
Without the original 3 other mothers who gave me the courage to start Panda’s Tree, supporting me, helping me, advising me and at times keeping me going, I would not have found the co-founders of project BCDS and my isolation would have undoubtedly gotten the better of me.
What started out of isolation and loneliness has developed into an amazing campaign to “unveil the unseen”, “defy expectations” and “embrace grace”. It has enabled us to feel connected to a community, offer a real inclusive safe space and to help support families and those with Down syndrome to be supported to build and maintain connections, bringing us all “Together Against Loneliness”.
Danise B. Grant
We can always do more together than we do apart. Together, we can do more than raise awareness. We can create belonging. We can challenge exclusion. We can choose connection over isolation and silence.
Happy World Down Syndrome Day!
