GREAT FALLS — University of Providence men’s basketball coach JC Isakson’s 2-year-old son, Clay Kobe, is preparing for the fight of his young life. The toddler, who was born with neonatal Marfan syndrome, will undergo open-heart surgery next week at Children’s Hospital Colorado in Denver.
Clay is part of a close-knit family that includes his mom Baylie, his 5-year-old sister Blayklinn and his twin brother Crue. Before hearing about his medical challenges, Isakson wants people to know who Clay is.
“Old soul. Clay is an old soul,” Isakson said. “He's very docile, but he’s a sweet, sweet, sweet boy. He’s gone through a lot. I mean, he’s been hospitalized six times, three life flights, multiple surgeries, with another one emerging here. And he’s a fighter, man.”
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Clay is also a budding basketball fan. He loves visiting the McLaughlin Center gym with his dad, a space that has become a second home.
“Clay loves to come up here to the gym. He loves it,” Isakson said. “He gets excited. He gets mad if my wife's dropping something off and he's in the car and he doesn't get to come in. He loves to shoot at his little hoop at home and watch basketball.”
The surgery will address severe defects in his heart, Isakson said. The procedure is expected to last several hours and will require Clay to stay in Denver for at least four to six weeks.
“Clay has a severely dilated aortic root,” Isakson said. “They're going to go in and they're going to do a graft and try to correct that, and it'll just be temporary. He'll have to have multiple (surgeries) over his life. If that goes well, the next is a leaky valve that they're going to try to repair and fix. It is open-heart surgery. It's full bypass. It's a major procedure.”
Clay was diagnosed with neonatal Marfan syndrome shortly after birth. The rare connective tissue disorder affects his heart, lungs and other parts of the body.
“In Clay's case, it went into effect in utero," Isakson said. "The features are just a little bit more pronounced and affect everything with connective tissue, so that's heart, lungs. He’s very long and lean, low muscle mass. But in Clay’s case, in particular, he has some heart conditions and lung issues that affect him the most.”
The Isakson family has faced incredible challenges over the past two years, but they say community support from Providence and beyond has made an immeasurable difference. Friends, family and even strangers have stepped up through fundraisers such as “Hoops for a Cause” and other donation efforts.
“It's amazing, you get reminders of people are really good,” Isakson said. “People are amazing. And they'll step up and help. Clay’s situation has always been unique because there's not an end journey to it. It's a lifelong thing. And the support has made it so we can seek the care where we need to seek it, but be surrounded by the people we love in this community, which is just amazing.”
One of the latest fundraising efforts is the Marfan Mamba Raffle, organized by JC’s niece Taleigh Isakson. It features a metal art piece donated by Ed and Cole Hobbs. Entries are $20 each, and all proceeds will go toward the family’s travel and medical expenses.
While Baylie will remain in Denver with Clay during recovery, JC will juggle his responsibilities as a coach and father with caring for Blayklinn and Crue at home. The family says it’s a challenge, but the network of relatives, friends and teammates has stepped up to help them get through it.
Clay has already defied the odds. Doctors initially said he might not live beyond 18 months, a milestone he has long since passed.
“There is no chart, there is no progression, there are no milestones. It's his journey,” Isakson said. “But our goal is to have him live life to the fullest. He's already exceeded the 16- to 18-month life expectancy, and we plan on shattering that and watching him blossom into a great young man.”
Isakson says prayers and support from the community are appreciated as the family prepares to travel to Denver.
“If you're one that prays, pray for Clay Kobe,” he said. “We appreciate it.”
