ABC27 WHTM Dauphin County family hopes research project will help son

Dauphin County family hopes research project will help son

A Dauphin County family is hoping a new research project will mean a better life for their son.

Braden Albert, 7, of Middletown, was born with a rare genetic disorder called MECP2 Duplication Syndrome.

The neurological disease occurs almost exclusively in boys, and was not recognized until 2005.

"Everyone has the MECP2 gene in their body and in Braden's case he has duplication of that gene", explained Pam Albert, Braden's Mom.  "He has seizures every single day, he wears diapers, he is non verbal, and he has hypotonia so he is very floppy."

Right now, there are only 200 reported cases of MECP2 in the world.  However, doctors believe there are thousands more that are undiagnosed.

"These kids are very special and they have a purpose in life too," said Scot Albert, Braden's Dad.

The Alberts' already lost their first son, Noah, to this disease.  He died one month before his sixth birthday.

"It's something I wouldn't wish on anybody," said Scot.  "It's very tough seeing your son die in your arms."

The Alberts' have hope a new research project will uncover a cure for MECP2.  Dr. Huda Zoghbi, from Baylor College of Medicine in Texas,  is starting an experiment aimed at reversing the syndrome. The research project will cost $236,000 over three years.

"I would love to be able to hear Braden say mommy," cried Pam.  "I have so many dreams for him, and I'm just hopeful that this research project will bring about a cure and that all these dreams will come true."

MECP2 Duplication parents have started a fundraiser called the 401 Project. Their hope is each of the 200 families affected by this disease will raise $401.00 dollars. They hope to raise $80,000 by April 1, 2012 to get the research project started.