The divorced father of a dying 12 year-old boy in Minnesota wants his son to continue his bi-monthly visitation despite the possibility the trip could kill him. The boy has a rare, inherited, incurable neurological disease that is getting progressively worse. His mother wants him to stay home for the last days of his life but his father fought for the right to take his son to his house twice a month, and won a partial victory.

A judge ruled that the child will be allowed to visit his father, but at a grandparent’s home which is a shorter trip than going to dad’s place. The father says the visits are more important than any risks posed by moving his dying child around.

Most children who suffer this particular illness die by their 10th birthday. The mother and father’s custody agreement requires weekend visits with dad twice a month at his home. With his latest decline, one of his nurses became concerned that fluid building up in the lungs could rapidly cause a medical crisis and kill him during the drive to or from the mother’s house. She says “his body is shutting down” but the father disagrees with her, saying “I believe they have their opinions. A child dealing with this disease, they don’t have that expertise.” A county court judge compromised on the mother’s demand the child not be moved and the father’s demand for his visitation rights. Father and son can be together at the grandmother’s house; she is a licensed practical nurse. The mother is appealing.

The hospice providing outpatient care urged the judge not to move the boy out of the stable medical environment set up in his mother’s home.

His mother offered to let the two spend time alone, but the father rejected the offer. He told a reporter, “It would be nice for me and him to have some final memories where we are together and not in that realm.”

There is also the question of what happens if the boy goes into a medical crisis. A licensed practical nurse, like his grandmother, has less training than the registered nurses who have been caring for the boy.

The mother says the court ruling “shocked” her. The judge has not explained her rationale or why she disregarded the warnings from the medical team.