Andalusia family hoping, praying ‘Fore’ a cure

Published 12:00 am Friday, April 13, 2012

The Fore family could well be standing on the precipice of a future they never imagined.

Brady Fore, a 9-year-old Andalusia boy, has been diagnosed with Angelman’s Syndrome, a neurological disorder characterized by severe developmental delays, seizures and neurological problems that affects one in 10,000 to 15,000 births. The disorder causes him to be non-verbal and to have seizures.

Brady Fore

But that may soon change, said mom Stephanie, as Brady has been chosen as one of 24 participants selected from a worldwide pool of 200 applicants to take part in minocycline trials for AS.

“This treatment has the potential to change so many lives,” Stephanie said. “In the mouse model (where the drug is tested on a mouse), this medicine reversed all cognitive and motor defects of Angelman Syndrome.

“This really could be a big deal, and we are all super excited,” she said.

Minocycline, an FDA-approved antibiotic, is traditionally used to treat bacterial infections in several organ systems. The single arm open label trial will take place at the University of South Florida in Tampa, Fla. It is being funded by the Foundation for Angelman Syndrome Therapeutics (FAST). Participants range in age from 4 to 12. The Fores and the other families selected must travel to Tampa three separate times at their own expense.

“This trial gives us hope,” Stephanie said. “It gives us the ability to dream beyond what our children have now. We now have hope that our children may one day lead normal lives, without all of the medical issues that they currently face. We have hope that we may one day be able to hear those sweet voices that have been locked up for too long now.”

She said all expectant parents dream of the day their child says “momma” or “dada.”

“But for children with (AS) that generally never happens,” Stephanie said. “When you are given the diagnosis, it rips your world apart. Doctors give the worst-case scenario.

“For us, the doctors said that Brady would most likely never speak, that he may never walk, and that we should even make future preparations as to who will be taking care of him,” she said. “They said there was no cure, and that was that. We accepted that there was no cure and were determined to make the most of his life, but were devastated by the limitations.

“Now, to see that all of this may not be true, that we don’t have to just accept the way things are, is an amazing feeling,” she said. “One day all of our ‘angels’ will have their own voices, whether it be now or later, it is going to happen!”

Stephanie said that not only did Brady get chosen to be one of the 24, but he will also be going first in the trials.

The family will leave next week for Tampa, Fla., she said.

“It’s going to be an amazing journey,” she said.

There is a fundraising effort ongoing for all the families selected to participate in the trial. To donate, visit www.firstgiving.com/fundraiser/lendahelpingwing/lendahelpingwing.