Super pricey therapies7 Giugno 2005
ERACLEA In tanti alla Marcia della solidarietà14 Giugno 2005
“By Karen Zapf
Monday, June 13, 2005
Zachary Balog, 9 1/2, makes his family’s day when he smiles.
Susan Balog, Zachary’s mother, said her son’s smile is so important because it means the Cranberry, Butler County, youngster, who has a rare, fatal degenerative neurological disorder, recognizes his family.
“He still smiles,” said Susan Balog, 39. “When you talk to him, he smiles and stretches. He hears us.”
June 1 marked a year since Zachary became the first person to undergo 9 1/2 hours of brain surgery to receive a new gene therapy. The experimental medical trial was performed at the New York Weill Cornell Medical Center in Manhattan.
Susan Balog said an MRI in December and a one-year follow-up exam showed that although Zachary’s condition has not improved, it hasn’t worsened. She said doctors hope to learn more from another MRI that Zachary will have in December.
“He’s the same since prior to the surgery,” she said. “There’s no change. The doctors are hoping (with the gene therapy) to stop the progression of the disease.”
Zachary developed normally as a baby and toddler, but shortly before his fourth birthday, he started having seizures, his mother said.
It took 16 months, until March 2001, for doctors to diagnose Zachary with Late Infantile Batten Disease.
“It’s diagnosed with a simple blood test,” Susan Balog said. “But the doctors weren’t looking for it.”
The fatal, inherited disease typically develops in children between the ages of 2 and 4. Affected children suffer progressive mental deterioration, seizures and loss of sight, speech and motor skills. Most children with the disease live only 10 years.
The Balogs’ other son, Joshua, 6, does not have the disease.
Susan Balog said Zachary has lost his motor and cognitive skills. He requires 24-hour care and has a feeding tube.
“The doctors don’t promise anything,” she said.
She said Zachary’s disease prompted the family to get involved in helping find a cure, and a series of “Zach Attacks” began. The fundraisers have brought in about $230,000 for Nathan’s Battle Foundation, which worked to fund the first clinical trial for the gene therapy.
The Balog family was on hand Sunday for the Zach Attack Car Show at Seneca Valley High School. The event was hosted by the Junior ROTC at Seneca Valley High School.
The event included vintage and custom-designed cars and motorcycles, a Kids Zone, bands, a Chinese auction and food vendors.
Bryan Frederick, 16, a sophomore in the ROTC program, said students worked for about a year on the car show. Frederick said meeting the Balog family motivated him to continue the project.
“We’ve been very busy,” Frederick said. “We had communicated with Mrs. Balog through e-mail. Then we met the whole family. Meeting Zach was emotional.”
Karen Zapf can be reached at firstname.lastname@example.org or (412) 380-8522.