Luc’s Light

Until We Stay

A Mother’s Journey Through the Rarest of Battles

Luc LeBlanc lived for eleven years with two extraordinarily rare medical conditions. His life changed his family forever—and taught his mother that love does not end when a heartbeat stops.

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The story of Luc LeBlanc

He was never only a diagnosis

Luc was a son, a brother, a student, an adventurer, and a deeply loved little boy who communicated far beyond words.

In Luc’s Light, Samantha shares Luc’s premature birth, the shock of diagnosis, years spent between hospitals and home, the supportive care the family explored, and the ordinary moments that made his childhood whole.

Across 14 chapters and 32 family photographs, the book honours Destiny and Maxwell’s bond with their brother and tells the truth about advocacy, caregiving, grief, and learning to carry love differently.

Inside the memoir

A story of courage, care, and enduring connection

A life beyond diagnosis

Luc lived with fumarate hydratase deficiency and polymicrogyria, but his story is also one of family, school, water, music, adventure, and joy.

Care and advocacy

The memoir follows the questions, nutrition, medical care, supportive therapies, and daily decisions that became part of loving and advocating for Luc.

Grief and continuing love

After Luc’s death, Samantha had to learn that moving forward did not mean leaving her son behind. His light remains part of everything she builds.

I am not moving on from my son. I am moving forward with him.
— Samantha Monaghan, Luc’s Light

Research and advocacy

Supporting Fumarase Deficiency research

Luc lived with Fumarate Hydratase (FH) Deficiency, also known as Fumarase Deficiency—an ultra-rare genetic mitochondrial disorder.

Because this condition is so rare, research remains extremely limited. I want Luc’s story to help change that.

I support the Fumarase Deficiency (FH) Research — Time Matterscampaign benefiting research at Children’s Hospital of Philadelphia. The campaign supports research led by Dr. Rebecca Ganetzky to advance understanding of FH Deficiency and help guide future treatment strategies.

As Luc’s Light moves toward publication, I also intend to dedicate a portion of the book’s proceeds to supporting FH Deficiency research.

Support FH Deficiency Research

This is independent support and does not imply that LUCÉ, Samantha Monaghan, or Luc’s Light is affiliated with or endorsed by CHOP.

Why I wrote this book

So Luc’s name and light continue

“Every person who reads this story helps keep his name alive.”

Samantha wrote Luc’s Light for families living with rare illness, parents learning to advocate, siblings whose grief is often unseen, and anyone discovering that love can survive the deepest loss.

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