An un-diagnosed condition left the Vega family searching for answers.
HudsonAlpha's Clinical Sequencing Exploratory Research Program provided just that, when their daughter, Tiana, was diagnosed with Rett Syndrome at two years old.
"Just you know you have hopes and dreams for your child for when they grow up, and knowing they won't get those things, it was tough until I met all these families that were living it, and going through it, and you realize life is ok, life is not always what you imagined in was going to be," Jeannete Vega said.
That early diagnosis of this rare disease allowed Tiana to get the right therapy.
After three years of treatment, Tiana is able to play with her older sister and communicate through technology.
"She's smiling, she loves to dance, she loves people, she's so social," Jeannete said.
Tiania's dad, Victor, says early diagnosis is the key to moving forward.
"We've known people to have unnecessary surgeries, and by not having an answer, they went there, but if they had an answer early on things could have been avoided," Victor Vega, Tiana's father, said.
The HudsonAlpha Double Helix Dash raises money for research, giving families who have children with rare conditions access to better care.
"There's gene studies going through right now trying to cure blindness, there's a Rett Syndrome study going through with trials to even cure that. Supporting the race speeds up those studies."
Right now, it's hard to get insurance to cover some of the treatments for rare disorders. Victor says money raised for HudsonAlpha, helps these niche syndromes become main stream.
"The goal is to make this as common as getting a flu check up."
To register for Tuesday's race follow this link: https://hudsonalpha.org/foundation/double-helix-dash-event/
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