Teen struggles against disease
Benefit slated for Dec. 16
A benefit will take place Saturday, Dec. 16 for a 14-year-old Waupaca girl who has an autonomic nervous system disorder.
In November 2014, Bailey Mitchell was diagnosed with Dysautonomia, a dysfunction of the autonomic nervous system.
She is the daughter of Codi Loughrin and Randy Mitchell and is an eighth grader at St. Peter Lutheran School, in Weyauwega.
The Believing Bailey Brave Benefit will be held from 1-5 p.m. at the Crossings Bar & Supper Club, near the intersection of state highways 54/22 and 110 between Waupaca and Weyauwega.
The benefit will include free food, a cash bar, games, silent auction items and Santa family photos.
T-shirts will be available for $12 and wristbands for $2.
The benefit will raise money for Bailey to have NueroStim treatments at Children’s Hospital of Wisconsin in Milwaukee.
It will also raise money for the family’s cost to travel to and stay in Milwaukee, as well as for future medical treatments.
Bailey has been in and out of Children’s Hospital of Wisconsin, in Milwaukee.
Some of her daily symptoms include dizziness/fainting spells, severe migraines, struggles moderating body temperature, delayed gastric emptying and intestinal dysmotility, severe pain and weakness.
Doctors believe it stems from Ehlers-Danlos Syndrome, a connective tissue disorder.
Last April, Bailey had a feeding tube placed and is dependent on it for nutrition.
Due to complications, Bailey has been hospitalized multiple times and undergone countless surgical procedures.
The NueroStim treatments are approved to start as soon as possible.
Bailey was part of a clinical test for the NueroStim treatments before they were FDA approved.
The treatments worked for her.
Now that they are FDA approved, it is the treatment her doctors believe will reset her nervous system and bring relief to restore her to most of her daily activities.
“It works kind of like a pacemaker for her nervous system,” Loughrin said. “It will help get her nervous system jumpstarted.”
Loughrin said her daughter is stable but continues to struggle.
“I just want her to have a normal life,” she said.
While the treatment received FDA approval, people are having to pay out of pocket for it, Loughrin said.
She said the family feels blessed to have the treatment available for Bailey and is grateful for the support of the community and local businesses.
A benefit account under Bailey’s name has been set up at Community First Credit Union and will remain open after this weekend’s benefit.
Donations are being accepted at the credit union’s various branches.
Loughrin said the family is also grateful for Bailey’s team of doctors and for another local family they connected with at Children’s Hospital.
It is the family of Weston Crist, who is receiving treatments there for a rare form of cancer.
The two families have spent time together at the Ronald McDonald House.
“While it is never any parent’s desire to be in this place, it is such a blessing to have friends to walk along side. We have been able to share tears and encourage each other when sometimes there are so many unknowns,” Loughrin said.
She said, “We are just praying we can remain complication free and be home for Christmas and raise enough to begin our next treatment steps in this brave girl’s journey.”