She has found such a source of strength: Empathy for SMA type-1 sufferers

Q. My cousin and I are in our late 20s and quite close. This past year, her newborn son was diagnosed with a condition called SMA type-1. It is a form of muscular dystrophy and is terminal. Babies born this way are missing a gene needed to build and maintain muscle. There is no cure, and babies rarely survive their first year.

I am in awe of my cousin's strength. She has developed a large network of friends on the Internet, who all have, or have lost, a child to this illness. Every time we talk on the phone or see each other, she updates me on all the babies who have passed away since the last time we spoke. Talking about these things helps her cope and prepares her for what is coming.

My problem is that I'm empathetic by nature and am becoming increasingly overwhelmed hearing about all these babies passing away. How do I curb what I am feeling so that I can keep listening for as long as she needs me? Signed, Overwhelmed

A: She doesn't need to talk with you about these deaths because she has this large support network. I would tell her it's become too much for you to hear of all this loss, and that you are grateful she has her support group, all of whom are experiencing the same thing. You are not really part of their "club" and must ask to be left out of the loop of updates. That said, tell her you will do anything you can for her, and you love her as always. You might add that it's wonderful she's found such a source of strength in fellow sufferers.

Read another story about empathy for a medical condition. Thanks to columnist Margo for the source story in today's Boston Globe.

He was the poster child for the Muscular Dystrophy Association: Michael Spencer

Michael Spencer, 33, was diagnosed with muscular dystrophy when he was 4, started using a wheelchair at 9, and lived a full life that inspired others. Twice he was a poster child for the Muscular Dystrophy Association (MDA).

Michael died Saturday in his Lorain, Ohio home, of respiratory failure that was a complication of his disease, said his mother, Gladys. He had duchenne muscular dystrophy, a neuromuscular disease in which muscles become progressively weaker, she said.

In 1981, he was the Ohio Poster Child for the MDA, and in 1982 was named the Northeast Ohio MDA Poster Child. He made many television appearances and was involved in several community projects to help raise money for the MDA.

He was 6 when he participated in several MDA "boot drives" conducted by Lorain, Ohio firefighters. One year he traveled to Washington, D.C., with his family and helped firefighters there with an MDA boot drive.

At 17, Michael received the Northeast Ohio MDA's Personal Achievement Award on March 25, 1992. The award recognized him for his accomplishments and inspiration to others afflicted with any of the 40 neuromuscular diseases.

Advice: Telling your story publicly, like Michael did, can help others with your disease.


Read one of our stories on a survivor of Lou Gehrig’s Disease, or read more from the source article in the Cleveland Plain Dealer by Wally Guenther on August 29.