Spring Campaign
Adrien's parents' testimonial
"Did we also have a wheelchair when we were babies?"
This innocent question from our boys, Antoine and Alexandre, made us smile, but it also reveals how much Adrien’s illness has become a part of our everyday life.
For our eldest, Ariane, it’s different. Before, the magic of spontaneity and unexpected activities filled our lives. But at the age of 6, when her youngest brother was born during the pandemic, everything changed. Overnight, mom had to go to the hospital to be with their seriously ill little brother, leaving them to face the unknown.
Born with a rare, unknown genetic disorder, Adrien is followed by over a dozen specialists at Ste-Justine Hospital. He is fed through a feeding tube, suffers from epilepsy, has severe intellectual and physical disabilities, and is partially deaf and almost blind.
“As parents, we mourn having taken away a piece of childhood from our children.”
Living with Adrien is an immense challenge. Our children are growing up in a medicalized world that requires constant adaptation. Spontaneity is no longer possible; everything must be efficient, effective, and prepared, whether it's medication or ensuring that the environment is suitable. Nothing is as simple as it used to be.
Each of our children experiences this differently, depending on their age and personality. Overall, they show great resilience, but sometimes their eyes reveal their disappointment when they cannot do certain activities. Despite it all, they always try to include Adrien, give him a role in the family, and create moments where magic can still exist.
Adrien was about 9 months old when he first went to Le Phare. The social worker had told me about this place that offered respite for children with life-limiting illnesses. I signed up without thinking too much about it. At that time, we were exhausted, and the kids needed to reconnect with their parents and find their balance again.
When I arrived at Le Phare and the staff took Adrien in their arms to rock him, I melted. No one around us had had the courage to hold him. It was incredible for me to know that other people were comfortable and able to care for him.
Our children never asked for a severely ill little brother who disrupts their daily lives. Despite their love and resilience, Le Phare allows my children to be children and to forget, for a few days, all the medical aspects that surround them.
-Gabrielle and Simon, parents of Ariane, Antoine, Alexandre, and Adrien
That’s why Le Phare is a breath of fresh air for the whole family. Giving a piece of childhood back to the siblings of the children at Le Phare is priceless.
