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About the age of 2, Alexis began to exhibit slight problems with his
equilibrium. We noticed that he didn’t run quite like other kids his age,
so we mentioned this to his pediatrician at his annual checkup. The
doctor told us that this was because Alexis’ joints were too flexible
(hyper laxity).
He told us to consult an orthopedist, who found nothing wrong.
We weren’t overly worried after that, and we didn’t suspect anything.
But Alexis’ running was still uncoordinated, which prompted us to
consult a neurologist, just to make sure. The first neurologist that we
consulted told us that everything was fine. As time went by and things
did not improve, we finally consulted Dr. Michel Sylvain, who noticed
hyperflexia (overly strong reflexes) and recommended an MRI.
On December 9, 2002, when Alexis was only 3 years old, an MRI
revealed that our son was suffering from leukodystrophy. Devastating
news. We were just told that our little boy who was so full of life and
love was slowly losing his capacities and would not live past his
childhood – at best between 20 and 30 – but under what conditions?
At the time, he only had a slight delay in his motor functions. It
was almost inconceivable that this could be true, but the inevitable
eventually happened. Since that time, he has declined a great deal
physically: shaking, problems balancing, lack of coordination…and losing
his sight…Yes, the optic nerve is also affected. Glasses cannot entirely
correct his sight, so he must live with this handicap.
What sort of future awaits him? After his motor and visual abilities,
which will continue to decline, all his other abilities may eventually
be affected, since his condition is degenerative: intelligence, speech,
his other senses (hearing, smell), as well as his vital functions:
breathing, swallowing, etc. And when nothing else functions any more,
death will inevitably follow…
Since this is a very rare disease, there is little research being
done on the subject. We hope to do everything in our power to help
advance research on leukodystrophies. Like all parents, we hope that our
child will continue to live…as long as possible. His parents. |
