16 October 2023
SAUK RAPIDS A Sauk Rapids family is trying to raise funds for a full-sized wheelchair van for their 6-year-old daughter who has a rare medical condition.
Alicia Messer said her daughter, Addison, was born with vitamin K embryopathy, caused by her mother’s hyperemesis gravidarum. That means Addison didn’t receive the necessary vitamins to develop, leading to spinal and airway deformities, hearing loss and “lots of different deformities,” Messer said.
Since she was born in 2017, Addison has undergone 13 spinal surgeries, with the first one coming within the first few months of her life.
A year ago, Addison had another spinal surgery. Her brain had been settling on previous revisions of her spine, which were basically “impaling her brain with her spine,” Messer said.
“So they had to take out all of the hardware and then break all the fusions and then do traction, lift her skull and her brain off of her spine, then refuse and re-anchor everything,” Messer said. “Which saved her life, which is great, except during this she lost her ability to walk.”
Addison has since outgrown her current wheelchair, and needs a bigger one. The current van the family drives isn’t big enough to hold a bigger wheelchair, Messer said.
That has led to the family looking to raise funds for a full-sized van that would be able to accommodate a larger wheelchair, the family of five, support staff (including nurses) and Addison’s supplies and equipment.
“We’re looking at doing a modification to a full-sized van, which can cost anywhere from $60,000 to $80,000, just to get the van itself,” Messer said. “Then we’ll have the county help with the modification portion. Just to buy the van itself is super expensive and it’s super hard, apparently. I can’t even find them to test drive.”
Messer said the family started with a manual-style wheelchair thinking that Addison would be able to gain the strength to maneuver herself around. But that’s not happening. The new plan is to purchase an electric wheelchair with a stand-up feature.
“That’ll allow her to play baseball standing up or go to an arcade and reach the arcade games down to doing dishes, things like that,” Messer said. “Even if we don’t do the electric wheelchair, she needs a wheelchair anyway. Any growth or a bigger chair than we currently have isn’t going to fit in the back of my minivan.”
Messer said that the family spends a lot of time on the road, heading to the Twin Cities a couple of times a week for visits to specialty doctors at children’s hospitals.
Another trip is planned for Messer, who plans to fly to West Virginia soon to see a potential vehicle that would meet their needs.
‘Awesome’ benefit raised $20,000
In September, a silent auction and benefit for Addision was held at The Waters Church in Sartell. Messer said the event was “awesome.”
“It was really quite crazy to see so many people there to support us,” she said. “We like helping people; we don’t necessarily like being helped. It’s hard for us. So it was a strange moment to see all these people from different walks of life, parts of our lives, all together at once, supporting us.”
Messer said the benefit raised about $20,000.
One of those in the crowd was former Minnesota Viking Tommy Kramer, who played for the team from 1977 to 1989.
“Addison loves football,” Messer said. “She was pretty excited.”
You can help
A GoFundMe page has been set up for the family at www.gofundme.com/f/addison-needs-new-wheels, which will go toward purchasing a wheelchair van. So far, the GoFundMe has raised a nearly $7,000 of its $30,000 goal.
The money will be used to buy a Ford Transit or a Promaster full-sized van, as well as funding for a company to add a wheelchair lift.
“When I was talking with some friends about this they started talking and are now helping us with this fundraising project and that is amazing because we need a van like this,” the Messer family says on the site. “So here we are again asking for help. We are so thankful and blessed to have the amazing support system we do, and we hope to one day be able to pay it all forward.”
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