Fundraiser to help raise awareness for childhood disorder PANDAS
An event to be held on April 12 will have the dual purpose of raising awareness for an autoimmune disorder called PANS/PANDAS and to help secure the needed funds for 8-year-old Neely, his mom Heather and dad Scott to travel to Chicago for much-needed treatment.
The Ward Family Fun Day will be held at the Rowland Road Pavilion in Brooks.
First identified in 1998, PANS/PANDAS remains largely unrecognized and undiagnosed by many physicians.
“Most people haven’t heard of it, nor have many doctors. And if they have they are reluctant to diagnose or treat it because they don’t know enough about it or because they have never seen it first-hand,” Heather said. “It’s complicated, really complicated. It’s hard to comprehend, diagnose and treat. And it’s a living nightmare for the child affected by it and for the entire family.”
Simply put, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) is when a strep infection is connected to manifestations such as intense anxiety and mood-change accompanied by obsessive-compulsive-like issues.
The onset may be up to 4-6 months after the strep infection if antibiotics do not fully eradicate the bacteria.
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) can be triggered by strep and by non-infective agents not yet fully determined. Symptoms associated with PANS cannot be explained by any other neurological or medical disorder.
The symptoms seen with PANS/PANDAS are numerous and can include anxiety, various compulsions and obsessions, sudden unexplainable rage and fight or flight behaviors, personality changes, defiance, major depression, inability to focus, deterioration in handwriting or math skills, age-inappropriate behaviors and various fears such as being poisoned, choking or throwing up.
“For most parents and families the sudden onset of these symptoms are undeniable and can send a family reeling and frantically searching to figure out what has happened to their child,” Heather explained.
While a number of different treatment methods have been attempted and proven unsuccessful, the family is at the point of needing an intravenous blood product (known as IVIG) that is regularly given to children and adults who have certain autoimmune illnesses.
There are no doctors in Georgia from whom the IVIG treatment can be obtained at this dose. Beyond that, said Heather, the cost associated with treatment is not covered by insurance.
Given that, it became necessary for the Ward family to travel to Chicago for treatment because Neely’s local doctor works with a physician in Chicago who has successfully treated the condition.
The cost of the IVIG treatment, associated medical fees and travel is expected to cost approximately $15,000.
Scott and Heather Ward have two other children, 5-year-old Lucy who also has PANS/PANDAS, and 19-month-old William.
The event will be held Saturday, April 12 from 11 a.m. until 5 p.m. at the Rowland Road Pavilion in Brooks.
Activities will include My Reptile Guys from Peachtree City, magician Ken Scott, the Line Creek Blue Grass Band, a silent auction, laser tag, inflatables, games, face painting, “Crazy Hair” and food. Tickets are $15 per person or $70 maximum for the family. Kids under age 2 are free. Ticket prices include lunch and activities for the kids.
Event organizers are asking for those interested to consider becoming sponsors. Sponsorships are priced at various levels from $250 to $1,000. Also needed for the event are in-kind donations and silent auction items. Vendors and volunteers are also needed and encouraged to contact Heather Ward at 404-227-5341 or at email@example.com
Current sponsors for the fundraiser include North Georgia Concrete, Speedi Pig BBQ, Brent Scarbrough & Co., Sutherland Farms, Robert Graham Homes, Jason Mask & Co., Gary Snyder Gar O Entertainment, the Ryff family, Maggie Zerkus, The Citizen Newspaper and Fayette Woman Magazine.
Tickets can be purchased the day of the event or online at www.fightingpansandpandas.com/product/family-fun-day-ticket/ or by emailing firstname.lastname@example.org.
To locate the pavilion from Senoia: take Ga. Highway 85 North, turn right on the Hwy. 85 Connector (by Landscape Nursery), travel about 3 miles and turn left onto Woods Road; travel approximately a mile and turn left on Kelly Road (dirt road – comes in at 45 degree angle), travel approximately one-third mile and turn right onto Rowland Road (dirt); the entrance is approximately 125 yards on the left with a wooden fence with gate.
To locate the pavilion from Fayetteville: take Hwy. 85 South, turn left on the Hwy. 85 Connector, travel approximately 3 miles and turn left onto Woods Road; travel approximately a mile and turn left on Kelly Road, travel approximately one-third mile and turn right onto Rowland Rd (dirt) and the entrance is approximately 125 yards on the left with a wooden fence with gate.