John McHugh, 31, is a sports enthusiast, avid movie-goer, and college graduate. He comes from a strong Irish Catholic family, and lights up when he talks about his family and friends. A few weeks ago, John became a proud uncle to his niece, Teagan (Irish for “little poet”).
When John was only four years old, he was diagnosed with Duchenne Muscular Dystrophy (MD), a genetic disorder causing progressive muscle weakness and wasting.
Fourteen years ago, his family and friends began fundraising for the Muscular Dystrophy Association (MDA) and they are still going strong!
Drinking for a Great Cause
John’s family and friends host two annual events—an auction dinner in the winter and a pub crawl in the spring.
“We look forward to these events every year,” John smiles.
This Saturday, May 3, marks the eighth annual “Irish Street of Dreams” pub crawl. Molly, John’s older sister, coordinates the event to include six different Irish bars every year.
Together, they’ve raised more than $25,000 from this annual fundraiser.
More than 100 of John’s closest family and friends are attending this weekend to cheer on their good friend and the Kentucky Derby hopefuls. This will be John’s first pub crawl fundraiser since receiving his tracheostomy last summer.
Anything is Possible
“At first, it didn’t affect me,” John remembers.
As he grew older, John began walking on his toes. John and his family opted for heel cord surgery to lower his heels and prolong his ability to walk.
At 16, John began roaming the hallways of his college preparatory school in an electric wheelchair.
John would not let the progression of his disease get in his way from accomplishing his dream of going to college. He attended the University of Illinois at Urbana-Champaign where he graduated with a degree in Advertising.
“It was the time of my life,” John remembers.
He loved the freedom of being on his own and developing new relationships with friends.
“U of I has a fantastic program for handicapped students.” He continues, “Every building on campus is wheelchair accessible.”
After graduation in 2005, John received a marketing position at a national bank where he worked for the next five years.
Living a “New Normal”
Last summer, John was having trouble sleeping and went to see his doctor. John’s doctor admitted him to the hospital where John suffered a seizure and stopped breathing. At that point, John received a tracheostomy and was placed on a ventilator.
After two weeks at a rehab hospital, John began adjusting to what he calls his “new normal.”
“I couldn’t wait to get home,” John explains.
Today, John receives 24/7 skilled home nursing care to provide the monitoring and life-saving interventions he requires to live with quality and independence at home.
John is looking forward to the annual pub crawl – and to share in the Irish fun!
Feel free to share stories with us about people and events you’ve found that are meaningful, fun, or just a good way to salute life!