One reason for this website is to share with people the miracles in Joe’s life thus far. Another reason that I wanted to share Joe’s story is to show how the drug Vigabatrin changed his life. He is not the same child that he was just 5 months ago. He now smiles and laughs and tries to talk. In July of 2003, he was 4 months old developmentally. Today, he is a solid 9 months. He has a quality of life that is just unexplainable in words.

My plea, from my heart, is that anyone whose child has Infantile Spasms, or if you know of anyone whose child has Infantile Spasms, not waste time. Put your child on Vigabatrin first thing!! Joe’s doctor didn’t mind us trying Vigabatrin, but he wanted to try other medicines first. Time is so crucial. You’ve got to try to stop the seizures as soon as possible.

Across the board, ACTH is usually the drug of choice to try first, and then it varies by doctor. Dr. Minassian, in Toronto, told us that Vigabatrin is the first drug of choice for Canada. Joe sees a pediatric ophthalmologist in Atlanta. He told me that he has a few patients on Vigabatrin and none has had vision problems. Dr. Minassian told us that he has hundreds on this drug and none has ever lost their vision. It’s just a possible side-affect.

The road we have traveled has been for a purpose. I’m not even going to try to figure out why this had to happen to my family, to my precious son. Only God knows. But Dr. Minassian told us that had we put Joe on Vigabatrin first that he probably would not be as developmentally delayed as he is now. Maybe we didn’t get a hold of Vigabatrin first so we could share with others and maybe they wouldn’t have to go through what we have had to go through. I don’t know. But I do know that I wouldn’t want any child to have to suffer as Joe has.

So please, try Vigabatrin first. No matter what any neurologist says. Vigabatrin changed Joe’s future in one dose. Maybe you could put your child on it sooner and not have to experience the endless therapy visits and sleepless nights.

I don’t understand why this drug is not available in the United States. Dr. Minassian said that it was money. That it was too expensive to research the drug and the affects on children. The worst side-affect is perifial vision loss. Joe was put on several drugs that could possibly have killed him! I don’t understand. That’s what hurts the most. Thousands of children are suffering because of money. Maybe one day it will be available to children here in the U.S. without having to go to Canada.

Until then, Joe’s neurologist in Canada is Dr. Minassian at the Hospital for Sick Children in Toronto, Ontario, Canada. Check them out on the web at www.sickkids.on.ca/. It will be worth it. Your child’s future is worth it.