JORDAN, Minn. - No parent ever wants to be standing by the bedside of his or her dying child.
But that is the reality for 12-year-old Zach West's parents.
"We don't know minute by minute if he's going to be here because things happen so fast with him," said his mother Rachele Chrismer.
Since he was two years old, Zach has suffered from a rare neurological disease called Infantile Neourazonal Dystrophy. But over the last few months, he's gotten progressively worse, so much so Chrismer says his doctors believe there's nothing more they can do.
"His body is completely shutting down," she said.
So he's come home to die with his mother and her family in Jordan. When KARE 11 stopped by Thursday, Zach was barely able to keep his eyes open, let alone move.
Normally, the boy goes to his dad's house near Minneapolis every other weekend, which is part of the custody agreement. But now, Chrismer wants her son to stay put in fear of what moving him could do. She petitioned a judge to keep him home.
"We were all shocked when we opened the mail last Friday when we got the judgment," she said.
Scott County Judge Diane Hanson ruled Mike West, Zach's father, could bring his son to his mother's house in Lakeville every other weekend starting Friday. The house is closer than his home in Minneapolis and West's mother is also a licensed practical nurse.
But in a letter to Judge Hanson, Zach's hospice medical team from Ridgeview Medical Center told her Zach should not be moved.
"The Ridgeview Hospice team currently working with Zachary West is not recommending he be transported or moved from his current environment due to his current medical status," wrote Jennie Pogreba with Ridgeview Home Health and Hospice.
One of Zach's nurses believes a move could even kill him because he's been having trouble with fluid building up in his lungs.
"And if you're not able to safely stop and help him, he could die very quickly," said Nicole Langhein who was hired by Chrismer a year ago to help care for Zach.
Zach's father disagrees. While he understands his son is dying, he believes moving him won't make things worse.
"I believe they have their opinions," he said. "A child dealing with this disease, they don't have that expertise."
Although Chrismer is willing to allow West into her home to see his son on a daily basis, West wants to see his son in a private setting before he dies, much like he's done in the past.
"It would be nice for me and for him to have some final memories where we're together and not in that realm," he said.
Chrismer has appealed Judge Hanson's decision, and because of that a spokesperson says Hanson cannot legally comment. She expects to make decision on the appeal next week.
"We are not trying to stop him from being with his dad. His dad loves him. We get that, but he's so incredibly ill," Chrismer said of her son.
Meantime, the ruling stands and West will pick his son up Friday evening.
"I understand where that fear comes from but how would she feel if I took him away from her," said West.
"I want to just grieve for my child. I don't want to fight him," added Chrismer. "I don't want this to be a fight. It's not fair to Zach."
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