DENHAM SPRINGS — Nineteen-month-old Xander James Smith has spent nearly half his life in and out of hospitals, fighting a rare genetic disorder that has left his family praying for stability, strength, and a life-saving bone marrow transplant.
His grandfather, Michael Allison, stood quietly in the packed Geisha restaurant Monday night, watching a steady stream of supporters walk through the doors — each person there not just for sushi, but for Xander.
“His name is Xander James Smith. He just turned 19 months yesterday, matter of fact,” Allison said. “Right now, we’re doing some fundraising around Livingston Parish to raise money for his cause and offset some of his medical needs. He’s been in and out of the hospital since early July, being diagnosed with a very rare genetic disorder. So we’re here at Geisha. Geisha has generously jumped in to give proceeds for tonight to him and his family… and again, bring awareness as well. It’s super rare, and that’s what we’re doing.”
A Rare Diagnosis
Xander’s health battle began this summer when he was admitted to Our Lady of the Lake Children’s Hospital with a fever that wouldn’t break. Doctors soon realized he needed more specialized care.
“In early July, he was admitted. After two weeks there, they determined that the best approach would be to send him to Texas Children’s Hospital in Houston,” Allison explained. “That’s where he was diagnosed with his BKC gene, and he spent about four weeks there before coming back.”
Dyskeratosis Congenita — the condition Xander is fighting — is a life-threatening genetic disorder that prevents the body from producing healthy blood cells. The only long-term solution is a bone marrow transplant.
Miraculously, despite the rarity of his condition, Xander has ten unrelated 100% donor matches — a gift many patients never receive. Five of those donors have already been contacted and confirmed.
But there’s a hurdle. A virus called CMV has taken hold while Xander’s immune system is compromised.
“He has five donors, but he can’t get his transplant until he beats this virus,” Allison said. “We’ve been battling CMV for four months, trying to get it down to zero so he can actually have his transplant. His struggle isn’t finding the match — his struggle is beating this virus so that he can go ahead and have the transplant.”
A Heavy Emotional Toll
As the medical battle continues, the strain on the family is immense.
“It’s emotionally and psychologically really hard on his parents and the extended family,” Allison shared. “Being in your young 30s and trying to make life-altering decisions is hard on anyone. We’re trying as parents and grandparents and as a community to rally around them, give them as much support and love as we can, and let the doctors and the parents do what they need to do to give him the best quality of life.”
A Community Steps Up
At Geisha, the mood was hopeful and determined. Restaurant owners Michael Tran and Tien Lee, along with General Manager Chris Burch, organized the fundraiser to send proceeds to the Smith family, even creating a specialty sushi roll in Xander’s honor.
“All three really stepped up,” Allison said. “They’ve been advertising, putting out flyers, sharing on social media. It’s not the first time they’ve done this. They rally around the community here in Denham Springs and champion for children. They’re fantastic people, and we’re blessed to have them.”
How to Help
A GoFundMe page is collecting donations to help cover the overwhelming costs of Xander’s treatment. Funds will support hospital and transplant expenses, medications, travel to Houston, temporary lodging, and daily needs like formula, diapers, and clothing.
Despite the medical battles ahead, Allison says the family is deeply thankful for every message, prayer, and act of kindness.
“He’s extremely lucky… and we’re blessed,” he said. “We just want to get him healthy enough to get that transplant and give him a healthy future.”
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