Share your Story: Barbara Tuber-Sooy

Posted in: Community Posts, Share Your Story

Name: Barbara Tuber-Sooy

Missing Since: 1980

Name: Matthew Tuber-Sooy

Missing Since: 1992


“I first became sick in May 1980. After 8 years I was diagnosed with what was then called fibrositis.

imageIn October 1992 my precious 12 year old son, Matthew, got what we thought was the flu. After 5 months and 15 doctors he was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. I was diagnosed then as well. My son missed the next two years of school entirely.

In 9th grade he was able to attend almost half the year; 10th grade even less. In 11th grade he seemed to be doing better. He still missed a lot of school, but was able to have moments of normalcy.

At the end of his Easter break he spent the night at a friend’s.

We got the call in the middle of the night no parent wants to receive.

Matt woke his friend, told him to call 911, and lost consciousness. He was never revived.

I was told the only people who died from this life zapping disease were those who took their own life. I’ve since learned better.

Living with this disease when my son died from it causes so much guilt. It should have been me instead of him.

He had his whole life ahead of him at 17. For 4-1/2 years his life was severely compromised. He never complained once. He was brilliant and the most loving, generous, unconditionally loving person I ever knew. A day, an hour, never go by without me missing him.

My life has been compromised but I don’t want to complain. He lived with so much worse. Every time people, including many doctors, would trivialize this disease, I’d want to throttle them. I don’t want another family to go through was we did, and continue to do.

PLEASE help get the word out to the world that this is a horrid disease and we need to have more research to stop this plague.”

2 Comments for : Share your Story: Barbara Tuber-Sooy
    • Jeff Smith
    • September 9, 2016

    Barbara, thank you so much for introducing us to the beautiful soul of your son. I look at him and can feel who he was, the sweetness the heart, the sensitivity. I often find that those of us with this illness are very sensitive people that feel so much. He was so blessed to have you as his mother for his too short of a journey. But he clearly expressed so much love and heart during that short time, and made a huge difference, he was way ahead of so many people in a whole life. And he is still making a difference. Hugs for your unbearable loss and gratitude for sharing Matthew with us. xx

    • Barbara Tuber-Sooy
    • December 7, 2016

    Jeff’ thank you for your kind words. Matt’s birthday is coming up, as well as the 20th anniversary of his death. I need to know he hasn’t been forgotten.

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