For Jennifer Shreifels, the highlight of the Jeremy’s Journey fundraising Bluegrass & BBQ at The Depot Pavilion in Inverness on Saturday was meeting a woman named Deb.
“She had actually had the same DBS surgery that Jeremy will be having, with the same surgeon as well,” Mrs. Schreifels said. “She was very informative. I dropped everything and grabbed Jeremy to talk to her.”
Her 18-year-old son, Jeremy, suffers from a severe case of Tourette syndrome.
The community has been raising funds for Jeremy to receive an experimental deep brain stimulation (DBS) surgery that will hopefully give him relief from his violent and painful tics.
Because the surgery is experimental for Tourette syndrome, it’s not covered by Jeremy’s health insurance.
“Talking to a doctor isn’t the same as talking to someone who has gone through what you’re facing,” Mrs. Schreifels said. “The first thing I asked her, ‘Did you have a personality change after the surgery?’ and she said, 'no, not at all.'”
That put her mind at ease.
“She gave me her phone number in case I have more questions,” she said, adding, “Saturday’s event was a tremendous success because it was a chance for everyone to meet Jeremy.”
The event, presented by Kovach Law Firm, produced by M&B Dairy and the Royal Legacy Foundation and supported by the Citrus County Chamber of Commerce, Pop Fusions, the city of Inverness, Lollygaggers Sports Pub & Grill, and Larry and Nancy Rooks, raised $9,755.
That brings the total to $244,645 to go toward the medical costs for the surgery and all the required pre-surgery and post-surgery therapies and procedures.
A date for the surgery isn’t set yet.
Jeremy has a July 30 appointment to discuss adjusting medications he’s currently taking that have suppressed the tics but have caused his emotions to be either flat or he exhibits extreme anger.
“If we take him off the meds, his violent tics might return, but he’ll be ‘normal’ again,” Mrs. Schreifels said. “It’s confusing because he’s had periods when his tics aren’t bad, but we don’t know if or when that happens or for how long.
“As a mother, I want my boy back, but I don’t want him to suffer either, so we don’t know what to do,” she said.
On Aug. 30 and 31, they meet with the DBS surgeon, and then surgery can be scheduled for three to six months after that.
Prior to surgery, Jeremy will need to undergo extensive psychiatric therapy to reduce his anxiety, which increases the surgery’s chance of success.
“We are so grateful to everyone,” Mrs. Schreifels said. “The love the community has shown our family is encouraging. We’re going to get through this ... I don’t know how I can ever thank everyone enough.”