Minnesota baby born with "bubble boy disease" gets life-changing transplant
A farm family from Dennison, Minnesota, received a heartbreaking diagnosis: their unborn son has a rare, deadly genetic disorder. But thanks to a selfless stranger, their baby's story is taking a remarkable turn.
Danielle and Nick Haugen learned by a gender reveal flyover that they were having a son. But that joy was soon joined by feelings of anxiety.
Decades earlier, Danielle Haugen's brother was diagnosed with X-linked severe combined immunodeficiency, or SCID.
"My brother died from this, and I never really got to meet him," said Danielle Haugen.
Also known as "bubble boy disease," the disorder only affects boys.
"When you're born with an immune system that doesn't work, you're at incredibly high risk of illness from common infections that other people could handle just fine," said Dr. Christen Ebens, a pediatric bone marrow transplant expert with M Health Fairview.
Six months into her pregnancy, Danielle Haugen was tested for SCID. Her unborn son had inherited the same devastating disease.
"I'm going to have this baby and he's going to die ... because I just know what my mom and dad knew," said Danielle Haugen.
Fortunately, survival rates have come a long way in the last 40 years thanks to newborn screenings and bone marrow transplants, which their son would need.
To protect their baby, the Haugens went to work creating their bubble — a huge task with full-time jobs and their 7-and-a-half acre farm.
"Basically we just went into high gear and started cleaning the farm up even more, and got rid of all the chickens, got rid of all the pigs," said Nick Haugen.
Friends and family held a fundraiser to help the family with bills as they'd be out of work for months.
ServiceMaster donated deep cleanings and HS Ultra installed UV lights in their home ductwork, and built a second unit for a friend's home so they could be close to the hospital after his transplant.
James Jacob "JJ" Haugen was born on Dec. 30, 2024. In early March, he received a bone marrow transplant. In late June, the Haugens finally returned to their farm. A stranger's bone marrow has given JJ a second chance at life.
The Haugens are advocating for everyone to register with NMDP, formerly Be The Match, to see if they can help save a life.
"Without our donor, we would not be standing her with our son alive," said Danielle Haugen. "I thank our donor, whoever she is, and I hope to meet her one day for saving JJ's life. Thank you."
The Haugens are also looking forward to a day when JJ can play outside with his big sister Brindley, as their lives move forward after gaining a new perspective.
"You're only young once," said Nick Haugen. "As much time as we can spend with him and do more travelling with him, and more fishing and hunting instead of work."
