When Violet Monson was a few months old, she was healthy and happy.
Nothing seemed out of the ordinary, until her mother Mandy began noticing changes.
“She totally just felt almost like a rag doll," recalled Mandy.
Violet became weak. She didn’t make much of an effort to move. Or later even speak.
That’s when Mandy took Violet in for what she hoped would be a routine medical checkup.
But, they didn't get any answers. Her doctor referred her to another specialist who confirmed that the Monson’s needed to pursue further testing to see what might be going on.
They suggested DNA testing at HudsonAlpha Institute for Biotechnology in Huntsville.
Dr. Greg Cooper is an investigator at Hudson Alpha who specializes in genome sequencing.
“Essentially what we’re looking for is kind of like a needle in a haystack,” said Cooper. “We do a lot of research trying to understand ways that our genes shape our health in particular the health of children.”
Tests on Violette were done, and five months later, the Monsons returned to Hudson Alpha for their daughter's diagnosis
They were told Violet had Rett syndrome; A rare genetic mutation affecting brain development and girls. After hearing the news, Matt and Mandy Monson remember the long heartbreaking drive home.
“When we put the car in park in the driveway, my wife looked at me and said OK we’ve given ourselves the time to cry and breakdown, and now we fight back," said Matt.
They are fighting against this disease that’s taking over their child, but thankfully, they finally got answers, though, from Hudson Alpha. Because of that, many doors have opened in how they provide proper care for Violet.
“We were able to get accommodations and supports for her, and we were able to get her mission device. Now she communicates with her eyes,” said Mandy.
Violet is also undergoing gene therapy at the moment, and clinical trials for treatment. It’s now become a victory for Violet and hundreds of other girls just like her.
“It’s only one part of the journey for the family, but it’s good that we can make this one step a little bit easier,” said Cooper.
That’s why fundraising events like the upcoming virtual Double Helix Dash (April 6-20) are so important to the future of Hudson Alpha and their mission and research that helps find critical answers for families like the Monsons.
“The people at Hudson Alpha and the work they’re doing is life-changing, and it will change your life, but it will also change your child’s life for the better,” said Matt.