Submitted photo Pictured are Bill and Meg Longhenry with their daughter Millie and their son Theo. looks on.

A “Meal With Millie” benefit will be held Saturday from 11 a.m. to 3 p.m. at Porter Hall.

Along with a taco in a bag meal available for a free-will donation, there will also be a silent auction and a bake sale.

Proceeds from the benefit will go toward the ongoing treatment of Millie Longhenry, the daughter of Bill and Meg Longhenry of Florida and the granddaughter of Roger and Nancy Longhenry of Porter.

Millie was born on Aug. 20, 2023. Not long after her birth, she was diagnosed with a rare brain malformation called Alobar Holoprosencephaly, the most severe form of a condition where the brain’s hemispheres don’t fully separate during development.

This will be Millie’s first visit to Minnesota.

“So many people in that area have loved on Millie and cared about her and supported us financially and through prayers, that we thought it would be fun for everyone to get to meet her,” Meg said. “It just grew from there.”

“When we first found out about Millie, so many people from the area supported us mentally, not just financially; called and prayed with us, and sent us letters,” Bill added. “We’re in Florida and we’ve been here for almost five years, but it is the Porter and Canby area that has supported us most.”

When Millie was first diagnosed with Alobar Holoprosencephaly, doctors in Florida didn’t give much hope for her survival.

Doctors believed Millie would never talk, walk, or feed herself. She would not be able to breathe on her own, and they believed she would likely spend her entire life in a completely vegetative state. Bill and Meg were told their daughter likely only had four to six months to live.

“We were refused care by several hospitals,” Meg said. “The hospital here told us we would not find any help in the state of Florida. It’s such a rare condition that people don’t know how to help.”

After spending her first two months in the hospital, Millie was sent home on hospice care.

“The one thing that made our situation unique was that they told us that she was going to die and that there was no hope, but they couldn’t really explain why she was going to die or why she was still alive,” Bill said. “They just told us, ‘Because of the images of her brain, this isn’t compatible with life.’ We were sent home with no hope, which I thought was a little unfair considering she was doing pretty well at the time and she only got better. Even today when we go see those doctors, they still speak very negatively about her life. My hope for her message being spread is that there is always hope. Never to give up hope. If you just give up, that would be the end. But because we are pushing and we’re fighting and staying optimistic, she is still thriving.”

The Longhenrys didn’t give up on their daughter. Soon, they were introduced to Dr. Brandon Crawford, a functional neurologist at NeuroSolution Center of Austin, Texas.

“He helps us with restoring function to the brain, with brain elasticity, developing new pathways,” Meg said.

“A lot of the same things that stroke victims have to do,” Bill added.

The visits with Dr. Crawford are not covered by insurance. Doctor visits are scheduled every three to four months to keep up with Millie’s growth pattern and how she continues to develop. The couple estimates that the medical costs of each Texas visit are $40,000 to $50,000.

“When we’re spending that kind of money, we’re not just seeing one person, but we’re seeing a team of people,” Bill said. “One person on the team is a doctor in childhood development, physical therapy, occupational therapy, all those different professions. It’s not just one person, we’re seeing a whole team of people that communicate on a daily basis to make sure Millie gets the best possible, most efficient care.”

During this journey, the Longhenrys have leaned on their faith to help get them through the hard times.

“We prayed for miracles from the moment we found out about everything,” Meg said. “One of the things that we continually say to each other and to others is that we just pray that this is Millie’s story to tell. Until she can tell it, we’re going to spread it and we’re going to speak of the miracles in her life and how God is using her to bring others to Him and to show of His goodness. He is a promise keeper, and He is going to be the ultimate physician and the one who is going to provide for her.”

Despite living in Florida, the Longhenrys have always felt a connection with the Porter community. Bill said his hometown has been supportive ever since Millie’s diagnosis.

“Someone said to us the other day, ‘This hasn’t been Bill’s community in over 10 years, and I think that hit both of us … It’s still the biggest community that we’re a part of,” Meg said. “It’s still the people that support us and love on us and care about us. Coming from a bigger town myself, I’ve never felt community the way that I’ve gotten to experience in that area, staying in the same place for many generations.”

“It still feels like home,” Bill added.

The Longhenrys initially planned to just hold a meet and greet for the Porter community, as they were going to be in town to spend time with family. But community members were persistent, asking for other ways to support the Longhenrys while in the area visiting.

“The event was never originally about fundraising,” Bill said. “It was supposed to be a thank you to the community for everything you’ve done for our family and for Millie … It’s grown exponentially, unintentionally. The message I would like people to hear is, you don’t need to come and buy anything, you don’t need to support us financially, don’t feel bad if you don’t have anything to give. We just want you to be a part of this and we would love for you to meet her, but also there’s a bake sale and a silent auction. Be free to check it out, but that’s not the main goal.”

More information about Millie’s journey and about the upcoming benefit can be found at movingmountainsformillie.org. The family also has a Support Registry page at https://www.supportnow.org/moving-mountains-for-millie.