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New Rochelle mom seeks cure for daughter’s ultra-rare disorderPosted: Updated:
A New Rochelle mom is on a mission to find a cure for the rare genetic disorder afflicting her daughter.
It's so rare that it doesn't even have a full name. Morgan Flanagan, 6, is one of 20 girls in the world with the disease.
She likes to dance to music, play on her iPad and eat Cheerios. She just needs a little help, her mother says.
Trish Flanagan says the disorder is known only as HNRNPH2. It's a neurodevelopmental disease caused by a mutation in one of her daughter's genes, and it is associated with developmental delay, intellectual disability, autism and seizures.
"We have just made it our life's mission to find a way to intervene on this, because the outlook isn't as bright as we want it to be," she says.
To do that, she launched the Yellow Brick Road Project this week, a nonprofit on a quest for a cure.
"If you remember from the 'Wizard of Oz,' the Cowardly Lion really struggles, and he needs courage, and we want to give our girl and others who are plagued by the same disorder confidence," Flanagan says. "It's a lot of work, but to know Morgan is to love her. And there's nothing that I won't do for her."
Morgan's little brother Shane is on board, too.
"I was wondering if people can make donations for my sister Morgan," he told News 12. "So they can find, well, a medicine to make her feel better."