“A Love Like Ours II There Is No Other.” People of my generation may recognize this as the title of a song that was my mother’s favorite. It perfectly describes the love that unites my grandson Nicolas and me. As my thoughts unfold, ideas align and words take shape. How can I describe this very special bond between Nicolas and me?
First, let me share a few details so that you can better understand our story. I am the grandmother of eight beautiful grandchildren, aged 18 months to 18 years. They are all wonderful, talented, and beautiful, just like yours, I am sure, and I love them all dearly.
Among them is Nicolas, a beautiful 10-year-old boy who was not given the same chance as the others. He was born with a rare genetic disorder affecting the FoxG1 gene, a condition so rare that only a handful of children worldwide are diagnosed with it. His development is severely affected, and his life expectancy is limited. From his earliest months, Nicolas faced intense pain and seizures that left us feeling helpless. Months turned into years of medical consultations with countless specialists, but no major improvements followed. It wasn’t until he was four years old that we finally received the diagnosis of FoxG1 syndrome.
From the very beginning, I was by his side, supporting Nicolas and his parents, offering help and comfort. I witnessed firsthand a beautiful family dynamic where love is the main driving force. It is deeply moving to see how his little sisters adore him and surround him with affection.
Over the years, Nicolas and I have developed a unique and privileged relationship. The hours spent rocking him, singing softly, strolling with him in his stroller, seeing his radiant smile and hearing his joyful sounds whenever he recognizes my voice, our little chats in the language he understands, or the stories he loves me to read—each of these moments has strengthened our bond and brought me immense joy.
Since the age of five, Nicolas has received care and respite at Le Phare, Children’s Palliative Care. Thanks to their team of dedicated professionals, his symptoms are
managed more effectively, and he feels more comfortable in his body. During his stays at Le Phare, he also benefits from the kindness and attentiveness of the staff and volunteers, who do everything possible to bring joy into his days. Meanwhile, his parents and sisters get the chance to enjoy activities that are otherwise nearly impossible to do together, and they are always happy to welcome Nicolas back home afterwards.
It is thanks to Nicolas that I came to know this remarkable place, Le Phare. I was deeply touched by its mission, and so I chose to get involved as a volunteer. After completing the necessary training, I’ve had the privilege for the past five years of bringing joy to other children who, like my grandson, face immense health challenges. The time I spend at Le Phare is magical; my greatest joy is to connect with the children, to let them know that they are not alone, that someone truly cares.
As I said at the beginning: A love like ours, there is no other.
Every second I spend with Nicolas counts twice as much, because there may not be as many left on the ticking clock of his life.
And if what I’ve written touches you, dear fellow grandparents, may you treasure your time with your grandchildren for as long as possible.
Carole Mailloux
