Mom fights to bring attention to son's rare disorder with no cure

Family fights to raise awareness of son's rare disorder

GWINNETT COUNTY, Ga. — “I’ve been blessed with such an incredible son,” said Deborah Hughes, mother of Daniel, 4.

Daniel, who lives in Gwinnett County, is fighting a neurological disease called Alexander’s Disease that keeps him from singing along in Pre-K.

Hughes says her son started to fall behind when he was a baby, but it took another two years before doctors diagnosed him.

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“It’s very rare. He’s actually the only one in the state of Georgia to have Alexander’s Disease,” Hughes told Channel 2’s Linda Stouffer.

It’s so rare that doctors have only diagnosed 500 people with it.

There is no cure. Daniel may not live past his 10th birthday. His mother says his organs will shut down.

Hughes wants to make this easier for the next family. She started a walk for ULF, the United Leukodystrophy Foundation, to increase awareness and research money for a group of related rare diseases.

“That money can be used to save someone else’s life. Reality is it’s not going to happen in Daniel’s life, but that’s OK. You deal with it day by day,” said Hughes.

She works every day to keep Daniel and everyone around him smiling.

“For the pain that he’s going through on a daily basis, this kid laughs more than anybody,” Hughes said.

Daniel and his team hope to raise $10,000 in the walk this weekend.