photo by Nell Mednick

About Survivor Mom

I am the surviving, 75 year-old mother of Peter Weisman who died of Duchenne muscular dystrophy in 1980. I wrote a book called Intensive Care: A Family Love Story about the experience. The book is about how a family struggles and often thrives, even under the constant threat of death. This blog is my cyber-sequel. From a survivor's vantage point, I'm going to blog, in honest detail, about how life was then, and how it is now. Expect to feel better.

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Duchenne Muscular Dystrophy

Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 boys (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.

My son, Peter, was diagnosed with DMD in 1968 when he was 3 years old. He died in 1980 at 15 years old. I wrote a book about our life with Peter, and now write a blog called “Survivor Mom” to connect with parents, family members, and friends who are caring and loving for people afflicted with DMD.

Intensive Care

A book about loving and caring for a child with Duchenne Muscular Dystrophy

Intensive Care: A Family Love Story is a memoir about how my husband, Larry and I, along with our sons Adam and Peter, struggled to thrive as a couple and a family, even as Peter was dying of muscular dystrophy. Admiring critics have variously described Intensive Care as “rowdy,” “angry,” “moving” and “sometimes hilarious.” The book, originally published by Random house, was made into a movie starring Liza Minnelli.

“A Classic”

~ Maggie Scarf

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Intensive Care

The Latest from Survivor Mom:

I am not a saint; I’m you.

Sep 20, 2012

Before Random House published it, five major publishers turned down Intensive Care, my book about bringing up a child with Duchenne muscular dystrophy. They thought the mother was "unsympathetic." She said the f-word.

Read on »

Good-bye: An open letter

Jun 06, 2014

Good-bye: An open letter to parents, relatives, and friends of boys with Duchenne Muscular Dystrophy.

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What you told your sons about dying

Mar 30, 2014

YOUR RESPONSES TO MY BLOG, TO TELL OR NOT TO TELL were, by turns, honest, sensitive, evasive and surprising.

Read on »