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Terminally-ill Lewistown teen working on "Montana bucket list"

Lewistown family helps teen son complete his "Montana bucket list"
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Russell Epperson
Julie Rooney
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Posted at 6:30 PM, Dec 18, 2021
and last updated 2021-12-20 11:18:38-05

LEWISTOWN — What would you do if you knew that this upcoming Christmas would be the last you’d get to spend with a loved one? One family in Lewistown is facing that reality and making the most of the time they have left.

Josh Stansberry is 17-years old, and he loves Christmas. He has a rare and terminal neurological disorder called neurodegeneration with brain iron accumulation. His body is ravaged by the effects. His spine was fused after it curved to 90 degrees, and he’s unable to swallow and his body is wracked by spasms.

But underneath the layers of pain, Josh is still the caring boy he always was.

“When he was able to still walk, he would just walk up to people, and just give them a hug,” said his mother Cheryl. “That’s the kind of person he is. He loves people. It doesn't matter what you look like, he just loves people.”

The Stansberry family moved to Montana from Colorado earlier this year to live closer to Cheryl’s parents in Judith Gap. Knowing time with Josh was short, Cheryl and her mother came up with the idea of a “Montana bucket list.”

“And I knew there were so many things that we could do in Montana,” Cheryl said. “It’s so big and beautiful. And I just wanted to make memories.”

She posted to the “Montanica!” Facebook page and received hundreds of suggestions.

And over the last few months, they’ve checked several items off the list. The Stansberrys took a trip to the Children’s Museum of Montana in Great Falls, spent a day at the Central Montana Fair, and a took a ride on the Charlie Russell Chew Choo in Fergus County.

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“Josh slept through most of the ride, but he was thrilled for the parts he was awake for,” Cheryl said. “He loves trains.”

But recently Josh’s condition took a turn for the worse, and the quest to complete the bucket list will have to be cut short. He was placed on hospice, and travel is hard on him so so exploring the state isn’t possible.

Cheryl wishes they had more time. In all reality, this will be his last Christmas. “It’s heartbreaking,” she said. “Every day is like, I lose a little bit of him.”

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But the Stansberrys are still doing what they can to make this holiday warm and memorable for Josh. And they’re getting help from everywhere, including his hospice nurses.

Julie Rooney is a hospice care nurse from Central Montana Medical Center. She didn’t know what to expect when she first visited with the Josh and his family.

“There was a lot of fear because we don’t do a lot of pediatrics, most of the people that we take care of are geriatric,” she said. “But you know, one smile and one hug from Josh and you're hooked.”

Julie Rooney

Rooney knew she wanted to help make Josh’s Christmas special.

“Cheryl told me she wanted this to be a great Christmas for Josh,” Rooney said. “And so I put the word out in and every time one of us comes for a visit, there's more Mickey mouse stuff and other gifts to bring. That’s the kind of team we have. Everybody's just like all hands on deck. Let's make this happen.”

On a suggestion from the online community that supports Josh, Cheryl created a PO Box and invited people to send Christmas cards to brighten Josh’s day. Neighbors, church members and even strangers have sent Josh and his family their prayers, and well-wishes.

While MTN was in the process of reporting this story, Central Montana Church of Christ minister Russell Epperson stopped by to drop off cards and gifts from his congregation.

“They’re in a tough situation, in a new place and a tough deal with Joshua,” he said. “And so we're still learning how we can help them and we'll be doing that and trying to walk along with them as they, as they face difficulties.”

Russell Epperson

Josh loves Mickey Mouse. And his face lights up when he receives mail. That’s what his family wants the most, to share Josh’s light in the time they have left.

The days are hard - but his smile cuts through the darkness.

“Josh is just a beautiful soul and he's a reflection of our faith,” Cheryl said. “I look at him and I just see someone that just loves unconditionally.”

The Stansberry family needs help making Josh’s last Christmas memorable. They invite you to send Christmas cards and greetings to:
Stansberry Family
PO Box 3626
Lewistown, Montana, 59457

Or visit the Joshy in Big Sky Country Facebook page.