A Minnesota nurse has become a mother to two boys with a rare genetic disease. Linda Trepanier is a 58-year-old woman who has fostered 16 children and three biological children over many years. She also has three children adopted — and three grandchildren. She has plenty of experience in childcare with all those children as well as many years of working as a nurse.

But she never has had an experience like this. When twins Marshall and Matthew were born, they were diagnosed with Pfeiffer syndrome. This genetic condition causes deformity of the skull and limbs. The boys have many special needs, including breathing problems. But Child Protective Services deemed that prior to leaving the hospital, their parents were not fit to provide proper care. At the age of four months, the twins were placed in foster care— with Trepanier. Pfeiffer Syndrome causes premature fusion of the skull, which means that as the brain grows, it can not expand. This is why infants have fontanelles or soft spots that allow them to grow their heads. The condition requires the twins to use wheelchairs, a breathing aid, and constant care.

“When I first saw the twins, I thought they were the most adorable babies I’ve ever seen,” said Trepanier.
“They had big heads and tiny bodies. As soon as I saw them, I fell in love. I knew in myself that these boys were mine.”

When social services came to her to talk about adoption, they only asked if she would adopt one boy. But Trepanier couldn’t stand the thought of separating the brothers. So, she adopted both of them, with the process finalized when the boys were three.

Now, she’s ready to settle in for the long haul with them.

The boys’ care includes taking their temperature every couple of hours and monitoring their breathing tubes. But Trepanier — now their mom — is optimistic that with enough care and love, they will one day be able to live independent, happy lives. In the meantime, she’s completely dedicated to taking care of them.

“I feel blessed that I can make the lives of these children better,” said Trepanier. “It’s a really hard job but seeing them happy makes me happy too.”

The twins have had three surgeries on their skulls.

They are also at risk to infection, so Trepanier and her partner have to be extremely diligent in caring for them. But they don’t care.

“I just fell in love with them. I knew in my heart that they were my boys,” Trepanier said. “People struggle to understand. They say, ‘Oh, those kids are going to tie you down.’”