PORTAGE PARK — As the Christmas celebrations were winding down this past holiday season, Annie McMahon could tell her 10-year-old son, Brendan, was struggling.
Brendan, who was diagnosed with Duchenne Muscular Dystrophy when he was 3, was using his wheelchair more than usual.
He needed more help getting up and down the stairs of the family's Portage Park home, and he could no longer walk to the drugstore with his mom for an afternoon treat.
"There are so many things we weren't thinking about that we now have to think about," Annie McMahon said, adding that Brendan will soon be unable to walk at all.
That means the McMahons must renovate their home to make it accessible for Brendan — and to allow him to be as independent as possible with a ramp to their front door, as well as a bathroom and bedroom on the first floor for the fourth-grade student at Chicago Academy Elementary School.
"We're not looking for anything fancy," said Brendan's father, Patrick McMahon, who has worked for the Chicago Fire Department as an engineer for 16 years. "We just want something that will make Brendan's life a little easier."
To help the McMahons cover the cost of those renovations, a pasta dinner and raffle will take place at 5:30 p.m. Saturday at St. Andrew's Greek Orthodox Church in Edgewater, not far from where Annie McMahon grew up, to benefit the House That Brendan Built Fund.
"We're overwhelmed and humbled by the response," Annie McMahon said, as her four other children — Marisa, Katie, Brian and Aidan — poured into their kitchen in search of snacks after school.
Duchenne Muscular Dystrophy, which is fatal, afflicts about 1 in every 3,600 boys. The disease causes the body's muscles to break down by weakening the protein that binds muscle mass together. Eventually, the disease attacks the heart and the lungs and leads to paralysis.
Most people who have Duchenne Muscular Dystrophy live until their mid 20s, although it is becoming more common for sufferers to live into their 30s, and sometimes into their 40s and 50s, according to the Muscular Dystrophy Association.
With the help of their extended family, the McMahons have set up an online fundraising page with a goal of $30,000, and have already raised more than $9,900.
Unsure about how much money they would raise, the McMahons have not begun drawing up plans for the work. One of Annie McMahon's cousins, who owns a general contracting firm, has offered to do much of the labor for free.
Brendan's diagnosis was a "slap in the face," Annie McMahon said.
"I kept asking how could this be," she said. "No one in my family has this. I barely knew what muscular dystrophy was when he was diagnosed."
Angered by a doctor she said handed her a pamphlet and walked away after diagnosing Brendan, Annie McMahon began researching the disease, got involved with the Muscular Dystrophy Association and focused on making sure that Brendan — who loves sushi and making crafts — has as normal a life as possible.
About 300 tickets have already been sold to the dinner, many to fellow firefighters and their families, Patrick McMahon said.
"It has really turned into something huge," Annie McMahon said.
The McMahons said they hope to turn the pasta dinner and raffle into an annual event, and to start a foundation to help other families who have children with this genetic disease, which has no treatment or cure.
Tickets for the dinner at St. Andrew's, 5649 N. Sheridan Road, are $40 for adults and $10 for children younger than 13. They are available online.
Tickets for the raffle — which will include sports memorabilia including a football signed by Chicago Bears legend Gale Sayers and a puck signed by Chicago Blackhawks defenseman Brent Seabrook — are $10.