PUTNAM -- Young Lucas Thor Kelley, from Dayville, is facing a long journey over the next year as he prepares for a full bone marrow transplant.
Lucas will start kindergarten this month, but will only be able to attend for a few weeks before he heads to Boston for the bone marrow transplant procedure. The almost 5-year-old was born with a rare genetic mutation, Chronic Granulmoatous Disease, or CGD, but was not diagnosed until he was just about 3.
“His white blood cells do not produce peroxide which is what you and I use to fight infections,” Lindsay Taylor, Lucas’ mom, explained.
CGD suppresses Lucas’ immune system, making him susceptible for infection and making regular childhood activities, like playing outside, a risk.
“It’s just been a matter of trying to keep him happy in the house, not do too much, yet go out when he needs to so he doesn’t go stir crazy,” Lindsay said.
The two years since his diagnosis have been difficult ones, forcing Lucas in and out of the hospital. Those years were brightened, however, by a phone call from Boston Casting. Lucas’ mom had posted his picture to their agency’s website when he was a baby.
The agency asked for Lucas to audition for the major motion picture, Patriot’s Day, staring Mark Wahlberg, which chronicled the 2013 Boston Marathon bombings. Lindsay said, “He went in for the audition and nailed it!”
Lucas’ job was to play Leo Woolfenden, the boy whose father was severely injured during the bombings and whose image made its way to the cover of Time Magazine following the bombings.
Amid the difficult subject matter ever present while making the film, Lindsay described the overall experience as the highlight of their last few years. Lucas even gained some special attention from the director, Peter Berg.
“He sat him up on his lap and he said Lucas you saved my movie, you gave us love,” Lindsay described.
The movie also gave Lucas connections with some big names in Hollywood, including Michelle Monaghan. She took to social media to try and help him find a bone marrow match, which Lindsay believes is what made the difference in getting him the match he needed.
“When Michelle put her posting up there was nothing. Then three months later there was a nine out of 10 match, then in the last year there was a 100 percent match and it makes me wonder,” Lindsay said.
This past June the need for a transplant grew as Lucas developed Colitis, causing him to loose large amounts of blood and put his life in danger.
Lindsay explained the risk of a transplant is high, but said going through with it is the necessary choice.
“It so tough because going into this I’m totally aware that he could die and that is probably the scariest thought and I just try to not think about it,” Lindsay said. She went on to say without the transplant, however, Lucas remains at high risk for fatal infection at any time.
“Choosing to do nothing doesn’t feel right especially if there’s a chance of him being completely cured at the end of this,” Lindsay said.
Ahead for Lucas are 15 to 20 days of chemotherapy treatment beginning in October, then the full bone marrow transplant, followed by nine to 12 months of quarantine.
“He’s a fighter, you know, he’s a tough kid. There’s just something about him that’s really special,” Lucas’ mom said, explaining the road ahead will be tough, but it’s something she has high hopes he will be able to battle through.
Lucas has one older and one young sister, and a baby brother on the way. His dad is currently facing his own medical setbacks as he deals with a condition called, Neuromyotonia.
The family has started a Go Fund Me page to help with the ongoing and upcoming medical expenses.