IN THIS TOGETHER
THE ISSUE: Teen embattled with Tourette syndrome in need of expensive surgery.
OUR OPINION: Don’t underestimate the generosity, action of Citrus citizens to help those in need.
You would be hard pressed to find many in the community who have not heard about Jeremy Schreifels today. Not long ago, Jeremy and his family struggled alone in his long battle with Tourette syndrome.
The disorder involves involuntary repetitive movements (“tics”) and/or vocal outbursts, from unusual sounds to offensive cursing. The disease has plagued the young adult most of his life. Diagnosed at age 3, Jeremy suffers daily with tics that cause him to jump, his arms to jerk, his head to suddenly turn, and a vocal tic that sounds like he is sneezing. The tics are severe and sometimes result in him tripping or falling, placing him at great risk for injury. The disorder and debilitating tics are relentless, but Jeremy and his family hold strong to their faith and have hope in a medical procedure.
The hope of Jeremy and his family is that Deep Brain Stimulation (DBS) will be the cure he longs for. The surgery involves implanting a device that sends electrical signals to areas of the brain that are responsible for his body’s movements. Electrodes will be placed deep in the brain, then connected to a stimulator device that will use electric pulses to regulate brain activity. The surgery, considered experimental for Tourette syndrome, is not covered by insurance, and comes with a hefty price tag. Out-of-pocket DBS and needed follow-up costs are estimated at $130,000.
After an article in the Chronicle in April, community members were moved to help Jeremy get the experimental surgery he needs. Three days after that first article ran, a caller to Sound Off expressed wanting to help organize a fundraiser to help Jeremy. The caller noted that Citrus was “a community of caring,” and right that caller was. Facebook began to buzz with posts from community members wanting to bring that fundraising idea to life.
Leon McClellan, vice president of M&B Dairy in Lecanto, had an “overwhelming feeling” that he too needed to help. So, McClellan took to what he knows and began contacting friends to help with a barbecue fundraiser.
Soon after others in the community also began organizing fundraisers of their own to help Jeremy reach his goal. The Phil Royal Legacy Foundation along with JM Gibson Mechanical Service Plumbing and Plumbing contractor organized a car wash and Italian dinner by Mariana’s The Stinky Rose. Popfusion came to sell their gourmet ice pops, T-shirts were printed, Art by Annie face painting, and even a good old-fashioned kid’s lemonade stand to raise funds.
An anonymous community member stepped up and donated $20,000 toward the goal. The Kiwanis Club of Inverness and another anonymous donor were able to cover the cost of the meat for McClellan’s barbecue. Two $10,000 donations came in from Dale and Mary McClellan and Jimmy Stoltz, owner of the Seafood Seller and Café. Brian from Extreme Decalz also jumped into action.
A second barbecue presented by Kovach Law Firm, produced by M&B Dairy and the Royal Legacy Foundation supported by the Citrus County Chamber of Commerce, Pop Fusions, the city of Inverness, Lollygaggers Sports Pub and Grill, and Larry and Nancy Rooks brought the total raised to $244,645 toward medical costs for the surgery and required pre-surgery and post-surgery therapies and procedures.
Citrus County and its members have brought the hope of DBS into reality for Jeremy. This community never fails at joining together to support someone in need. In short, Margaret Mead said it best, “Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”