GLOUCESTER — Sixteen-year-old Hailly Craig is a sweet and fun-loving young lady who misses competitive cheerleading and hanging out with friends.
After many hospital visits and tests, Hailly was diagnosed with autoimmune encephalitis/PANS last year.
“One day, she was doing algebra and competitive cheer and it was like a switch was hit and she was like a 3-year-old,” explains Hailly’s father, Seth Craig. “The cognitive abilities — she can’t read, she can’t math, her coordination is off. It is a struggle, she is aware of it and that’s hard. Many days she just wants to be a normal teenager. It’s heart-wrenching as a parent.”
Autoimmune Encephalitis also called PANS (pediatric acute-onset neuropsychiatric syndrome) is a clinically defined disorder characterized by the sudden onset of obsessive-compulsive symptoms (OCD) or eating restrictions, concomitant with acute behavioral deterioration in at least two designated domains. PANS symptoms may include anxiety, sensory amplification or motor abnormalities, behavioral regression, deterioration in school performance, mood disorder, urinary symptoms and/or sleep disturbances, according to Pandas Physicians Network.
“Basically, it causes inflammation of the brain and can manifest itself in a lot of different ways,” said Craig, “When we look back, we can see there were many signs and symptoms and didn’t really put it all together until she had a really quick onset of hallucinations. And, then we started to look back and figure it out. She has alpha-gal syndrome, which is from tick bites so, we knew she had exposure to tick bites and it is the infection from the tick that causes autoimmune encephalitis.”
Diagnosis and treatments have been rough for the family, especially since insurance does not cover the cost of travel and treatment Hailly will receive with a specialist in Washington, D.C.
“They put in good antibodies from donors — kind of like a blood transfusion — and then they will give her a medication that will kill the bad antibodies that are attacking her cells,” said Craig. After this, there will be a daily infusion of antibiotics for several months at home.
Coach Galina Yordanova, owner of Dreams Gymnastics Center in Toano, has been looking for ways to assist the family with the expenses.
“Hailly has been a coach with us for over a year. We have known this family for over ten years. We miss her here and want to support them as much as we can,” said Yordanova. “Hopefully we can get her to her better self really soon by raising awareness and getting donations for treatments.”
All the sale proceeds from Dreams Gymnastics pro shop are going directly to support Hailly’s treatment. In addition, a $10 per person donation is being asked of those attending the gymnastic meet being held at the center on Sunday, Nov. 10.
Several other local events and fundraising activities are being planned.
A community yard sale is being held on Saturday, Nov. 16, from 9 a.m. until 5 p.m. at 102 Outrigger Court in Williamsburg, and on Saturday, Dec. 7, Gloucester Brewing Company is hosting HAILLY JAM along with The Ballast Band. Suggested donations for attending are $20 per adult and $5 per person under 18.
Matt Williams, lead singer for The Ballast Band and co-organizer, said, “This event of epic
proportions will be a time for our community to come together to rock out and support Hailly and her family in their battle against a terrible disease.”
Donations to assist the family can also be made directly to the family’s GoFundMe page.
Learning more about PANS as they go through this medical journey, Craig says that in addition to focusing on Hailly’s recovery, the family wants to raise awareness.
“The community support has been amazing. We are just in the midst of this now but we have had many families reaching out — people who have had a kid struggle with (the same thing). It is hard as a parent to figure out which end is up, where to go and what is the best treatment. A lot of it is misdiagnosed. Studies say 1 in 200 people could struggle with some kind of PANS/PANDA, so it is not as rare as we think it is. We just want to help others as we find out more ourselves.”
