Fighting for Danny

A Danville family counts its blessings and combats a rare disease

Danny McHale was born on August 3, 2000. He was a bright, cheerful baby who surpassed all of his infant milestones except for one: By six months of age he still couldn’t sit up on his own.

Concerned, Danny’s parents asked Danny’s pediatrician, Carol Mondry Fine, if anything was wrong. She, too, found Danny to be smart and engaging, but didn’t like that he was a little “floppy,” and referred the family to a pediatric neurologist. Within 10 minutes of meeting the neurologist, the McHales were told their son might not live to see his first birthday.

They learned that “floppy” is a word often used to describe children, like Danny, who have spinal muscular atrophy, a disease that weakens the nerves controlling motor functions and muscle development.

“The doctor said to take Danny home and enjoy the time we had left with him,” his mother, Mary, says. “Here was our son laughing and smiling … and we were being told to plan his funeral.”

The McHales refused to accept their son’s prognosis. The deeply religious couple turned to their Catholic faith for solace—and also began searching for medical advice that went beyond preparing for the end. “We knew there had to be something we could do for Danny other than simply watch him waste away,” says Danny’s father, Joseph.

The McHales had a hard time gathering information. “This condition affects 1 in 6,000 children, whereas Lou Gehrig’s disease [amyotrophic lateral sclerosis, or ALS] affects 1 in 100,000,” Mary says. “But it’s not as well-known, because many patients die from the disease while they are still very young.”

The couple discovered an international organization called Families of Spinal Muscular Atrophy, which introduced them to doctors who saw a future for Danny.

“There are very promising therapies on the horizon,” says Kathryn J. Swoboda, M.D., a clinical geneticist and neurologist at the University of Utah School of Medicine and one of Danny’s doctors. “We have already identified the genes involved in the disease, as well as compounds that may lead to potential treatments. In the next few years, we hope to see the disease go from being a largely fatal one to a chronic condition that offers patients a longer, fuller lifespan.”

Clinical drug trials, like one conducted at Stanford University, have allowed Danny and other children to reach milestones that once seemed impossible. Not only has Danny lived beyond his first birthday, but at age four he gets around on his own in an electric powerchair with the finesse of a NASCAR driver.

But for all the progress and hope, the McHales and other families fight a daily battle to keep their children healthy.
“When Danny gets a cold, he doesn’t have the strength to cough,” Mary says. “A common cold can easily develop into a case of life-threatening pneumonia.” To keep things from going that far, each morning, Danny undergoes an hour of basic respiratory care on a “cough-assist” machine to clear his lungs.

Fueled by a desire to help others, the McHales do more than fight to keep Danny healthy. Along with members of their parish and a dedicated crew of friends and neighbors, the McHales plan the annual Concert for a Cure. This year’s event will take place June 25 at the Bridges Community Center in San Ramon, and will feature singer-songwriter Doug Eltzroth and the Don Veca Combo. Previous concerts have raised a total of more than $130,000.

While the McHales continue to search for a cure, they also regularly meet with other Bay Area families whose children have been diagnosed with the condition. They share the story of their son, who is now preparing to enter kindergarten. It’s a story filled with hope, faith, love, and hard work.

“I’ve learned lessons from the McHale family that were never taught in medical school,” says Dr. Fine, Danny’s pediatrician. “Danny and his family are proof that medical miracles really do exist.”

Concert for a Cure will be held June 25 at the Bridges Community Center, 9050 S. Gale Ridge Rd., San Ramon. For information or to make a donation, visit www.concertforacure.org.