ALS fundraiser Saturday in honor of Cary area man

When stay-at-home dad Doug MacInnes was diagnosed with Lou Gehrig's disease a little more than a year ago, he didn't tell his wife for a week because she was going through a particularly busy time at work.

That is typical of Doug, said Sue MacInnes, his wife of nearly 30 years. The couple lives in Trout Valley, near Cary.

“He'll do something really great, and he won't tell you,” she said. “He's always waiting for you to notice.”

Amyotrophic lateral sclerosis (ALS), known as Lou Gehrig's disease, is a degenerative disease that slowly robs people of their ability to walk and move. In the last year, the couple's three children, Emily Somers, 27, Chris MacInnes, 25, and Molly MacInnes, 20, have worked to promote Steps for Doug, an organization dedicated to raising funds to benefit ALS patients and their families.

“We just couldn't sit around and focus on things we had no control over,” Molly said. “We wanted to do what we could do so we could channel our emotions about ALS into something productive.”

Steps for Doug will hold a fundraiser from 1 to 4 p.m. Saturday at Galati's Pizza & Pasta, 7 Jandus Road, Cary. Tickets are $25 and include a buffet and two drinks. There will also be a silent auction with items like a weekend in a timeshare in Mexico.

The ALS diagnosis was devastating to a man who had been “Mr. Athletic and Mr. Healthy,” said Sue, who works as chief marketing officer for Medline, a medical supply company based in Mundelein.

Sue and Doug, both 52, grew up together in eastern Pennsylvania, calling each other's parents “aunt” and “uncle” — monikers they have kept to this day, much to the confusion of others — and going on family canoeing trips together.

Cupid didn't strike until age 22, just after Sue graduated from college. A year later, in 1982, they were married.

“He drinks milk every night, eats as healthy as possible. He exercises two, three hours a day, he did the P90x (fitness regime), he did triathlons, skiing, running, biking competitions, swim team. He never smoked, never did drugs,” Sue said. “Of all people to happen this to ...”

Emily said the family applied their grandmother's long-standing advice: “You've been sad, now you've got to get mad.”

“Since he was the stay-at-home parent, he really raised the three of us,” Emily said. “When we first found out about it, everyone was kind of lost. For the past year, everyone has been trying to find their new path.”

Emily lives with her husband nearby in Cary; Chris moved back home from Arizona a year ago; Molly, a pre-med student in Colorado, is taking 24 credit hours this semester so she can graduate a year early to come home.

Initially, Doug wasn't all that excited about having a nonprofit in his honor, he said. “I'd like to be in the background, there has been more publicity than I would have been comfortable with.”

In an impressive first effort, the organization raised $31,000 in October at the Chicago Marathon, in which Molly, Chris and several relatives and friends participated.

Much of it is due to word-of-mouth facilitated by the vast network of friends and acquaintances Doug developed during his years as the only dad among groups of mothers, his wife said.

“He's got a lot of friends, the ladies love him,” Sue joked, adding the family has received invaluable help in the form of dinners, rides to doctor and physical therapy appointments, and much more.

Doug says he's gotten somewhat used to the attention. “Everybody is very supportive; I never thought they would get it this far,” he said.

Doug worked as a computer programmer before he decided to become a stay-at-home dad when Molly was five months old. “I don't think I enjoyed every minute of it,” he says. “But looking back, it was the right thing because of the way the kids turned out.”

The disease has taken a toll financially, with the purchase of a new home that Chris remodeled to make it wheelchair-friendly, plus a $25,000 electric wheelchair and a $56,000 used wheelchair-accessible van. “We're lucky we were in a situation we could afford to pay for some of that stuff,” Sue said.

In the last year, Doug has tried to do as much as possible, from Bulls games to trips to Mexico and Italy. “If I had to do it again, I would certainly push to do more while I could do more,” he said.

Sue MacInnes wants people to remember to cherish what they have.

“Sometimes you get angry because you do everything right, and look what happens,” she said. “There are so many people that don't value what they have when they can walk and can talk.”