SPRING GROVE – Lucas Spence wants to run in a Milwaukee marathon, but first he needs a new pair of lungs.
The 20-year-old Spring Grove resident was diagnosed with cystic fibrosis – a genetic condition that causes mucus to build up in the lungs, making breathing difficult and sometimes nearly impossible – at 4½-months-old after one of his lobes collapsed.
Because his parents, Linda and Mike Spence, were carriers, doctors recommended they check his siblings, including his fraternal twin, Jacob, who ended up testing positive.
Children born to parents who both carry the recessive gene have a one-in-four chance of having cystic fibrosis.
The Spences had a better chance of winning the lottery than Jacob Spence also having cystic fibrosis, Mike Spence remembers the doctors saying.
Despite twice-a-day treatments to cut down on the mucus buildup, Lucas Spence was active through grade school and high school.
He ran cross country for seven years and enjoys snowboarding, wakeboarding and playing football and basketball with his friends.
“I like to go fast, whether it be cars or running,” Lucas Spence said. “It was kind of nice to excel at something because I was not very suited for academics.”
He even went skydiving when he was 16, but the pressure the air put on his chest meant he couldn’t breathe when he had his head up. He worked around it, though, finding that he could inhale if he looked down and exhale when he looked up.
When his father was going to run in the Milwaukee Lakefront Marathon, Lucas Spence wanted to join. But at 14 or 15, he was told he was too young.
From there, his lung function began to deteriorate.
While he hadn’t been hospitalized all through elementary and middle school, he has spent 46 weeks hospitalized over the past five years.
When he was a senior at Richmond-Burton High School, he would have to stop about halfway through a 3-mile race because he couldn’t breathe. But as soon as he could, he was going again.
At this point, his lungs have deteriorated – scar tissue has replaced healthy tissue to prevent the necessary amount of oxygen from getting into his bloodstream – to the point he needs a transplant. Jacob Spence isn’t to that point yet.
While they wait for Lucas Spence’s name to top the transplant list, the Spences are preparing for the medical costs. Friends have put together two fundraisers, and there’s a benefit in the works for May.
They were told there would be around $100,000 in out-of-pocket medical expenses, plus Lucas Spence will need to stay in a Pittsburgh hospital for three to six months after the surgery, Linda Spence said.
“Cystic fibrosis is one of the most expensive medical conditions that anybody can be saddled with,” Mike Spence said. “They told us that when he was diagnosed. ... It’s the lifelong care, and it continually gets worse.”
Between their two sons, the Spences have averaged $1.3 million in medical expenses each year over the past three years, Mike Spence said. A large portion of that was covered by insurance.
But if the transplant goes as planned, Lucas Spence won’t have to do twice daily treatments. The cystic fibrosis won’t affect his new lungs.
He won’t be able to go in nontreated water, so no more wakeboarding, but he’s looking forward to the things he will be able to do.
He plans on becoming a physical education teacher – or maybe a tattoo artist, he mused – after he finishes his general education requirements at McHenry County College and transfers to University of Wisconsin-Whitewater, his parents’ alma mater.
The Spences have registered with the Children’s Organ Transplant Association. For information or to donate, visit http://cota.donorpages.com/PatientOnlineDonation/COTAforLucasS. Information also is available there about the various fundraisers.