Alexander’s Hope

Bridging the Gap for Sialidosis

by Dr. Bill Skojec

Alex, Angela, my mother, and I went to Ontario, Canada in June 2001 on a journey to renew hope, and meet the people who have become so important in our lives. It was an inspirational journey for me and it left me recharged to fight again. Seeing another cute little boy, Tyler, afflicted with what Alex has, made me want to get back into action. It’s hard to describe what it was like meeting everyone one and a half years after ground zero (Alex’s diagnosis). We met Ida and Perry, Tyler’s parents, and Dr. Igdoura, the researcher I have been in contact with the past year and one half. It was like meeting old friends who are bonded together by a past tragedy, even though the tragedy continues to be played out. There was also a peculiar sense that fate or a higher power had brought us altogether. Tyler and Alex were born 20 days apart, in the same year that Dr. Igdoura set up his laboratory to investigate Sialidosis.

The day consisted of taking pictures and being interviewed by the local paper and the McMaster university P.R. person. Both families sat down with Dr. Igdoura to get updates on his research. They are still a year or more away from trying the virus and gene therapy on mice and monkeys. However, both children have one severe mutation and one lesser mutation. This milder mutation produces some level of the enzyme they are missing. Thus, another line of research involves finding a way to stimulate the gene to produce a higher level of the enzyme. Dr. Igdoura speculates that the milder mutation came from me, and my wife had the severe mutation because it is common in persons of Jewish ancestry.

At the end of the day, our two families did some picture taking so we could remember each other and capture this wonderful moment. The boys interacted some and were very cute in doing so. The pictures will tell the story very well. We said our goodbyes and agreed to share this load as much as possible.

I enjoyed this trip very much and I hope to make it again one day for Alex. I still cling to the hope that one day there will be a cure for these disorders. It might not be in my son’s lifetime, but that is something I accept as a possibility. Remember this: “Hope opens doors where despair closes them, and Hope is a good loser because it has the divine assurance of final victory. Keep your hope alive!

Next: Bridging the Gap: Photo Album

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