Five Year Old Campbell County Boy Faces Fight With Rare Disease - abc27 WHTM

Five Year Old Campbell County Boy Faces Fight With Rare Disease


Campbell Co., VA - At five years old, one little boy from Campbell County, has had to endure literally hundreds of trips to the doctor. He was even misdiagnosed several times.

But then finally a clue; his parents learned of his rare, and often misunderstood disease, only to find out that treatment would be thousands of dollars, and not covered by insurance.

For more than a year Grayson has had PANDAS, a rare autoimmune infection, caused by a seemingly simple strep throat. But it was what happened after the strep subsided that they knew something was wrong.

By all accounts, five year old Grayson Tolley, looks like a normal kid.

But it's what we can't see that's landed Grayson in more doctors' offices than he can count.

"We just knew very early on that something was just not right" said Denise Tolley.

It was March 2012 when Grayson was diagnosed with strep throat. Not out of the ordinary for a four year old, but what happened next was far from normal.

"There was a lot of different symptoms that could be explained with some things, but then other pieces just didn't fit" said Denise.

Following strep, Grayson began having violent mood swings, screaming temper tantrums. In a matter of months, he was diagnosed with OCD, ODD, and Asperger's.

But a final diagnosis in March 2013 would prove to be his last.

"The pediatrician was the one who finally diagnosed him with the PANDAS" said Thomas Tolley, Grayson's Dad.

Grayson has what's called PANDAS, short for a long title: pediatric autoimmune neuropsychiatric disorders, associated with strep infections.

"I don't like the PANDAS because it's making me not learn" said Grayson.

After Grayson's body attacked the strep, it began attacking healthy cells in his brain, associated with his behavior, leading to his development of various mental disorders.

Treatment is an IVIG and will cost more than $9,000 and is not covered by the Tolley's insurance.

They've got one wish this Christmas, they want Grayson healed.

"It's been, all of it, emotionally draining, financially draining, and it's been hard on the whole family as a whole" said Denise.

The family has organized a fundraiser for Grayson to be held on January 4th at the 1727 Lynchburg South Moose Lodge on Waterlick Road. The event begins at 1 p.m. and all proceeds will go towards paying Grayson's medical bills.

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