Spring campaign
Pediatric Palliative Care: What We Don’t Dare to Name
The words “pediatric palliative care” can feel intimidating. They often bring to mind endings, loss, and discomfort. And yet, at Le Phare, these words tell a very different story: one of life. A life that may be fragile, sometimes short, but filled with meaningful moments that deserve to be supported, celebrated, and cherished.
Demystifying pediatric palliative care means understanding that it is not about giving up. On the contrary, it is a deep commitment to children and their families, from the moment of diagnosis and throughout their journey.
Because even when time is short, life goes on, in smiles, in gentle gestures, in the memories being created.
Your support allows us to be there, day after day, transforming worry into peace, pain into comfort, and uncertainty into meaningful connection.
Thank you, sincerely, for helping every child thrive… all the way to the end of life.
Spring campaign
Pediatric Palliative Care: What We Don’t Dare to Name
The words “pediatric palliative care” can feel intimidating. They often bring to mind endings, loss, and discomfort. And yet, at Le Phare, these words tell a very different story: one of life. A life that may be fragile, sometimes short, but filled with meaningful moments that deserve to be supported, celebrated, and cherished.
Demystifying pediatric palliative care means understanding that it is not about giving up. On the contrary, it is a deep commitment to children and their families, from the moment of diagnosis and throughout their journey.
Because even when time is short, life goes on, in smiles, in gentle gestures, in the memories being created.
Your support allows us to be there, day after day, transforming worry into peace, pain into comfort, and uncertainty into meaningful connection.
Thank you, sincerely, for helping every child thrive… all the way to the end of life.
Discover the story of Sarah-Claude, Esteban’s mother, who passed away at the age of 9
My son’s name is Esteban.
Today, my husband and I live on a small farm with our three daughters. There is life everywhere. And yet, for years, our daily life was shaped by illness.
Esteban was diagnosed with Sanfilippo syndrome, a degenerative and incurable disease, often referred to as childhood Alzheimer’s. Every five to six months, especially from the age of five, he would gradually lose essential abilities, like walking, swallowing, or speaking.
And yet, he was a deeply happy little boy who loved Paw Patrol, cuddles, and kisses. His joy for life was contagious. He lived intensely, fully, in his own way. But for us, as parents, the reality was sometimes exhausting.
Respite: Learning to breathe again
Before discovering Le Phare, we were in survival mode. It was impossible to live a “normal” life, and I often felt guilty about the experiences my daughters were missing.
Our first respite weekend was overwhelming. I cried endlessly when I left Esteban. We were afraid. Afraid he wouldn’t adapt. Afraid things wouldn’t go well.
And then, slowly, something shifted. A member of Le Phare team told me, “Please, don’t worry. Esteban is happy here. He knows this is his second home.” And it was true. He was comforted, surrounded by love. So many people cared for him. In that moment, we understood: he was at home, at Le Phare.
Thanks to respite care, I was able to sleep, regain my strength, and most importantly, create memories with my daughters too. Le Phare wasn’t just caring for Esteban, it was caring for our entire family.
Support through illness: Being accompanied every step of the way
Around the age of six, when Esteban stopped eating on his own, we knew the disease was progressing. He was losing weight. He was in pain, though we never fully understood why. The uncertainty was constant.
During this fragile time, Le Phare worked hand in hand with all of our care teams. We were never alone in making difficult decisions.
Le Phare supported us throughout this journey. While my husband was going through a deep depression, Le Phare helped me stay strong, to continue being the pillar of our family. Without them, I would have collapsed.It’s impossible to name every gesture that marked me, but they accompanied Esteban with dignity until the very end.
Bereavement support: Learning to live with the absence
After his passing, we lived in a fog. We kept functioning, without truly realizing what had just happened.
It was thanks to a call from a social worker at Le Phare that I joined a support group for grieving parents. That group helped me face my pain and begin the long, difficult journey of grieving my son.
Very few people can truly understand a journey like ours, how much Esteban and his illness filled every part of my life. Being able to share with others who felt similar emotions was incredibly liberating. It helped me accept my reality and, slowly, begin to live again.
Discover the story of Sarah-Claude, Esteban’s mother, who passed away at the age of 9
My son’s name is Esteban.
Today, my husband and I live on a small farm with our three daughters. There is life everywhere. And yet, for years, our daily life was shaped by illness.
Esteban was diagnosed with Sanfilippo syndrome, a degenerative and incurable disease, often referred to as childhood Alzheimer’s. Every five to six months, especially from the age of five, he would gradually lose essential abilities, like walking, swallowing, or speaking.
And yet, he was a deeply happy little boy who loved Paw Patrol, cuddles, and kisses. His joy for life was contagious. He lived intensely, fully, in his own way. But for us, as parents, the reality was sometimes exhausting.
Even today, Le Phare remains a deeply important place for our family. We often underestimate the power of community. The pain doesn’t disappear, but it becomes a little easier to carry.
To our community of donors, I would like to say this:
Every donation allows a family like mine to breathe. Every donation supports a child. Every donation uplifts parents, siblings, and grandparents.
Every donation changes a life.
Thank you for being part of this light.
— Sarah-Claude, mother of Esteban, who passed away at the age of 9
Today, dare to support life. Dare to support Le Phare.
Pediatric palliative care does not follow a linear path. Each child and each family experiences a unique journey: needs, interventions, and support evolve over time, depending on the progression of the illness. And we are here to support them thanks to you and your donations. Thank you from the bottom of our hearts.
Your donation can transform daily life for children and families at Le Phare.
Thank you for your generosity.
