Canadian Mom Fights for a Drug, but It Doesn’t Work for Her Son

We all have those memories of Christmas time when we wanted that one toy so badly. We would have gladly given an arm or a finger to get that gaming system, bike, doll, or ultra-cool action figure.

Then, once we got what we wanted, the wanting disappeared. Sometimes it disappeared for no good reason, but sometimes the desired object was not all that it was purported to be. The latter is the case of a boy named Morgan and the drug used to treat his Morquio syndrome.

People with Morquio syndrome, also called mucopolysaccharidosis (MPS), usually start to display tell-tale signs of the condition early in life. This progressive condition mostly causes abnormalities in bones. Those with the condition are typically short in stature, and the bones of the torso are malformed. Many also have difficulty with their eyes, as a cloudy film covers the cornea.

There is no cure for the condition, but Vimizim does offer some hope of slowing the progression of degeneration.

The mother of the young boy Carolle, fought for 18 months to get the local government of New Brunswick, Canada, to approve financing for one year’s worth of the new medicine. It was only for a trial of one year because the average cost per day is nearly $1000.

Unfortunately, once Morgan began taking Vimizim, which is taken intravenously, he started to have a severe reaction to the drug. In all, his mother only administered 18 doses (a fraction of the year’s total). His mother says that his condition did improve after the injections, but the side effects were just too great.

Carolle is hopeful it’s just that Morgan is allergic to one of the elemental parts of the medicine. If so, there is a chance that it could be manufactured and administered without the offending agent. If not, there’s nothing left for the family to do.

His mother still believes it was a worthy battle to fight, because other children may benefit.

Read more about Morgan and his mother’s experiences by clicking here.


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