When I Was Told There Was Nothing I Could Do to Save My Child

When my 4-month-old baby, Max, was diagnosed with a fatal brain disease, I was told by doctors to “not become attached to him” and to look for a pediatric nursing home instead.

In desperation I contacted the largest organization I could find that had anything to do with Canavan disease. I was so excited to have some hope after initially hearing there was absolutely nothing I could do to save my precious child. But my hopes were dashed again when the woman on the phone told me about the wonderful grief counseling available, support groups and once-a-year family conference.

I just kept asking about treatment or anything I could do to help my baby. Unfortunately, the only thing they had to offer was emotional support and a family reference guide to help connect affected families. These things seemed wonderful and absolutely essential — for someone else, but not me.

young boy with walker
Ilyce’s son, Max, when he was young.

I didn’t want support or comfort. All I wanted was to save my baby. That’s it, that’s what I wanted. I wanted someone to do something to save my Max. I was determined to be the exception. I didn’t care what anyone said. I absolutely refused to lose my child, and my stubborn refusal to accept the diagnosis has grown into the largest organization in the world dedicated solely to curing Canavan disease.

No matter what else happens in my life, I know my child has become an adult, and I was able to set in motion treatment options for children diagnosed since his birth. The path I chose has oftentimes been lonely and met with resentment and even hostility. But I always knew in my heart if I absolutely refused to lose Max, I could choose to dedicate my life to saving him. This wasn’t the standard course. It was a grueling uphill battle of parent-driven research and experimental medicine. Max is still here, and I will fight with every fiber of my being to keep him here as long as possible.

No one should ever take away your hope.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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