Louis' Story: Saved by his Little Brother

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Four-year old Louis, featured in Ludovick Bourgeois' lullaby ''Seul au combat'' knows a lot of things most children his age haven’t yet learned: he knows about immune deficiency, bone marrow, and transplantation. And he knows that his little brother, Theodore, was just eleven months old when he helped save Louis’ life. That’s a lot to know! 

Everything changed for Louis and his family in March, 2018 when the little boy, then aged three, was diagnosed with chronic granulomatous disease, or GSD – a life-threatening condition.

Simply put, GSD is a disorder that causes the immune system to malfunction, robbing the body of its ability to protect itself from foreign invaders such as bacteria and fungi.

Louis’ parents were alerted to the problem when he developed an inflammation in the neck that made it difficult to turn his head. They learned from doctors at the Montreal Children’s Hospital that Louis’ best chance of beating GSD was with a bone marrow transplant. They learned also that the strongest odds of finding a compatible marrow donor was to look within the boy’s immediate family. Enter Theodore, Louis’ baby brother. “We would realize only later how lucky we actually were that Theodore was 100% compatible”, says the boys’ mom Jessica. The bone marrow transplant was performed last fall.

Did the transplantation work?

It would take several anxiety-ridden months to find out for sure: there first had to be a lengthy period of post-transplantation convalescence when Louis and his family had to live in isolation to guard against any infection while Louis’ body built up an immune system from the new marrow. From last November on through the winter and into the spring, they were practically prisoners in their home! It certainly made Christmas a little different. A little sad, says Jessica. “But we were together, so that’s okay.”

Time moved on and did its magic. In the spring, the family got the all-clear to resume a normal life, and the two boys, Louis and little Theodore, started daycare. That’s when the first real test came: the kids brought home a virus. “We’re not sure what it was”, says Jessica, “but it gave us all a fever and a cough. Louis, too. It also made him a little cranky, but he came through it. And with no special medication!”

Today, Louis is a happy, healthy four-year old boy who knows a lot for his age. He knows about cross-contamination and infections. And he knows to say “thank you” to his little brother. Which his mom says he does. Regularly.

Watch “Seul au combat”, featuring little Louis.



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