Jay Hegstad

Jay Hegstad, 5, visited Disneyland in September through the Make-a-Wish Foundation.

Thanks to the Make a Wish Foundation of Alaska and Washington, Jay Hegstad-Enneberg got his heart's desire.

The 5-year-old Longview boy, who is severely disabled due to a genetic neurological disorder, visited Disneyland in September, where he visited "It's a Small World," sailed into Never-Never Land on the Peter Pan ride, and had a face-to-face with Mickey Mouse.

"Mickey Mouse spent 20 minutes with Jay" in the Make a Wish Lounge, said the boy's mother, Mindy Hegstad.

The lounge also allowed Jay, who doesn't have the ability to regulate his body temperature, to cool off, Hegstad said.

She was buoyed by her little boy's responses at Disneyland. "He was so happy," she said.

She's also encouraged by a coalition of parents whose sons have MECP2 Duplication Syndrome, the disorder Jay inherited.

In January, those 200 families banded together to raise $236,000, the amount necessary to fund research directed at unlocking the mysteries of MECP2 at Baylor College of Medicine in Houston.

The group calls itself "The 401 Project," because $401 is the amount each family must raise to fund the research.

In an email to The Daily News, physician and scientist Dr. Huda Zoghbi of Baylor confirmed that she will be leading the research. Data suggests that MECP2 might be treatable, and "the experiments would be important for better understanding of the disease process," said Zoghbi, who is the director of the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital.

MECP2 Duplication Syndrome, a chromosomal disorder passed on by mothers almost exclusively to sons, has affected Jay for most of his young life. He has its trademark neurological problems, which include mental retardation, limited or absent speech, constipation and reflux, spasticity, teeth grinding, constant respiratory infections, epilepsy and developmental regression.

"Jay's Journey," a story in The Daily News on May 18, 2010, chronicled his diagnosis and the progress of the disease.

The boy suffered his first grand mal seizure June 11, his mother said.

"It lasted eight minutes, and he was unconscious for 12 hours," Hegstad said. "We were not sure he would ever come to." Admitted overnight to Doernbecher Children's Hospital at OHSU in Portland, Jay regained consciousness the next morning and soon began walking.

"The anti-convulsant medication has worked" to prevent more seizures, Hegstad said, although Jay suffers sudden, brief episodes where his head drops and he can't control it.

Two days before Christmas, the boy broke his leg and has spent the ensuing weeks in a cast, she said. "He can pick the cast up now and swing it around, and he's standing up." Although doctors have diagnosed him with osteoporosis, "He just keeps going," his mother said. "I am so thankful for his strong spirit."

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