Brady Tess puts the palms of his 6-year-old hands on his forehead to help his thoughts and words come together.
The first grader at Estates Elementary School is chatty. But he fights short-term memory loss and a speech impediment after two strokes.
The youngster has a rare neurological condition, Moyamoya disease. A few hundred children are diagnosed with it worldwide every year.
A scar on each side of his head are fresh from brain surgery at Boston Children's Hospital in October.
That's where a pediatric neurosurgeon developed a surgical procedure for children with the disease, characterized by narrow blood vessels in the brain that brings heightened stroke risk.
All Brady wants to do is rescue centipedes from the family lanai, eat mac 'n cheese for lunch and see Mickey Mouse at Disney World.
He could barely contain his excitement for an upcoming family trip to Disney.
The family has been to hell and back since June when Brady's father, Cpl. Dan Tess, with the Collier County Sheriff's Office, recognized stroke symptoms in Brady. That was four days after the youngster's sixth birthday. He had a second stroke Halloween weekend.
"He's just getting back in the groove," his mother, Kristy Tess, 38, said this past week.
The Tesses are grateful to family, friends and co-workers who have helped over the last six months and raised money for expenses such as airfare and hotel rooms, which are not covered by insurance.
"Because of the Moyamoya (disease), he still has a 90 percent chance of having more strokes," his mother said. "It will go down after two years to 45 percent. He will always be susceptible to having strokes."
An older son, Trevor, 9, has had to watch his little brother go through so much, she said.
Life changed in a blink
On the last day of Cub Scouts camp June 17, Brady held his certificate in his left hand, even though he is right-handed. That evening his right leg became weak. He fell to the floor.
"He just staggered like he was drunk," his mother said. "My husband said he had had a stroke and we took him to North Naples Hospital."
Strokes in children are very different from strokes in adults, but do account for 5 percent to 10 percent of all strokes, Dr. Britt Stroud, a pediatric neurologist with Golisano Children's Hospital in Fort Myers, said.
The first symptom of Moyamoya disease, which primarily affects children, is often transient ischemic attacks (called mini-strokes) which result in weakness or paralysis on one side of the body, according to the National Institute of Neurological Disorders and Stroke.
Diseased blood vessels are among the causes of strokes in kids, Stroud, the local pediatric neurologist, said.
Adults are commonly treated with clot buster medicines, well supported in studies, but the use of clot busters is not well established in children, he said.
"Due in part to the relatively rare nature of pediatric stroke, there is not yet enough data in the literature to base consensus care guidelines," Stroud said.
However, a pediatric stroke trial is ongoing where 17 academic centers across the United States and are collecting data on pediatric stroke in a standardized fashion, he said.
"We are hopeful that the data collected over the years will help guide best practice," he said. "Currently much of stroke treatment depends on the cause if it is found."
At the hospital in North Naples, Brady was put on fluids and given aspirin. An MRI confirmed a stroke and he and his mother went by air ambulance to All Children's Hospital in St. Petersburg.
More tests led to the diagnosis of Moyamoya disease, where the major carotid arteries in the neck are compromised and blood flow to the base of the brain is constricted.
The brain tries to compensate for the reduced blood flow by growing thin vessels. Japanese scientists who first described the disease said the images of the tiny vessels on an angiogram look like a "puff of smoke," which translates to "moyamoya" in Japanese.
Because the disease is so rare, its causes are not fully understood but experts believe genetics may be a factor.
Brain surgery in Boston
The Tesses learned about pediatric neurosurgeons at Boston Children's who developed a surgery that is effective. Brady had the surgery Oct. 20 in Boston.
More than 400 children and adults with Moyamoya have been treated successfully, according to the Boston hospital.
The surgery involves taking a donor vessel and connecting it to the surface of the brain to increase blood flow to the brain. In Brady's case, he needed the surgery on both sides of his brain.
"(The vessels) become a new source of blood to his brain," his mother said. "They start to grow in six to eight weeks."
Post discharge instructions included 42 ounces daily of fluid so he stays hydrated and a daily aspirin.
"It (is) a very big chore for a 6-year-old," his mother said of the fluid intake. "He hates it."
Brady went trick-or-treating on Halloween but the next morning he couldn't move his left hand. His left lip was drooping. Looking back, he may have had a mini-stroke but they got an aspirin in him and were back at NCH North Naples.
After consulting with doctors at All Children's, Brady and his mother were flown to Joe DiMaggio Children's Hospital in Miami. After a six-day hospital stay, he is now on aspirin twice a day and 45 ounces of fluid.
That is working better for Brady, his mother said. Soup and gravy count, so does chocolate milk, Gatorade and sweet tea.
With each passing day, Brady's parents are counting on the vessels that were transplanted to the surface of his brain to provide a better pathway of blood flow. His soft brown hair is growing slowly around the scars.
Brady missed a lot of school this fall but is now back for half days.
The ordeal of Brady's illness has meant getting stronger as a family.
"I've had my moments when I break down," she said. "You've just got to stay strong."
(A family friend established a GoFundMe account for Brady Tess at www.gofundme.com.)
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Information from: Naples (Fla.) Daily News, http://www.naplesnews.com
