I am the mother of Peter Weisman who died of Duchenne muscular dystrophy in 1980, at the age of 15. Intensive Care: A Family Love Story is about how our family struggled and often thrived, even under the constant threat of death. I wanted to tell my truth about how our family, not just Peter, lived it. I wanted the book to read like a full-blown novel, not a sob story.

~ Mary-Lou

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.

Intensive Care

Before Random House, the original publisher accepted Intensive Care, five other well-known publishers turned it down They found the mother –me – unsympathetic. By that, they meant they wanted me to accept the burden of a dying child with grace. They wanted me to be a heroine who would sacrifice whatever hopes I might have had for my own life and happiness and devote myself utterly to the wellbeing of my doomed child. They didn’t want me to be angry and sarcastic. They certainly didn’t want me to say the f-word. They wanted a saint.

And they weren’t happy about my relationship with my husband either. When a young couple learns that their child has a fatal disease, they wished for a fairy tale husband and wife to run into one another’s arms. They wanted them to gaze into one another’s eyes and there find love, comfort and support. Instead, too often when the real Larry and the real Mary-Lou looked into one another’s eyes, we found only our own grief and anger reflected there.
Today Larry and I are in our late 70’s. Amazingly, our marriage survived, but not without seismic love-hate print outs on our martial EKGs. Pete’s brother Adam is in his mid-50s. He and his wife Rebecca, a nationally ranked runner and expert web-designer, live in Tucson, Arizona. Adam is a lawyer, like his father. He dotes upon his three healthy, happy, athletic children: a girl, who is a cross country runner, and two boys: The older brother is a grade school champion goalie and indoor wall climber. His younger brother literally follows in his brother’s sporty footsteps. The whole family hikes, swims and skis.

Intensive Care