Alexis
Verville-Tailleur
Born
October 23, 1999

Alexis Verville-Tailleur (16 years old)
Born October 23, 1999

4H Syndrome

Around 2 years old, Alexis began to experience mild balance problems. We found that he didn’t run the same way as other children his age. At his yearly check-up with his pediatrician, we talked to him about it. He told us that it was because of the overflexibility of his joints. (hyperlaxity)

He referred us to an orthopaedist who found nothing.

We were not unduly worried nor did we doubt anything. But Alexis still stumbled ungracefully as he ran which led us to see a neurologist to get to the bottom of it. The first neurologist we saw told us that everything was normal. As nothing improved with time, we finally saw Dr. Michel Sylvain who noticed his hyperreflexia (too strong reflexes) and recommended he undergo an MRI.

December 9, 2002, when Alexis was only 3 years old, the MRI discovered that he suffered from leukodystrophy. Unthinkable news. They told us that our little child who was full of life and love would progressively lose his abilities, die young—at best around twenty or thirty years old, in such conditions…

At that time, he had only minor motor delays. It was almost inconceivable that it could be true. But what was supposed to happen, happened. He has since lost a lot physically: tremors, uncoordination and imbalance... and nevermind his vision... And yes, his optic nerve has also been affected. His glasses do not fully correct his vision, so he has to just live with his handicap.