Vanessa Chartouni-de la Serna and her husband, Ricardo de la Serna, first traveled from Miami to the UC Davis MIND Institute six years ago. It was after their then 15-month-old son, Calincito, had been experiencing developmental delays. At the time, Chartouni-de la Serna was 35 and expecting her second child. She was offered prenatal genetic testing. But when she received the results she was confused: Chartouni-de la Serna learned that she was a carrier for “fragile X.”
"I was like, ‘fragile what?’” Chartouni-de la Serna said. “I had to look it up on the Internet.”
Her Internet search also told her that a leading center for fragile X research and treatment was in California at the UC Davis MIND Institute, so she arranged a visit with Medical Director Randi Hagerman and her team at the Fragile X Research and Treatment Center. In the interim she learned that Calincito had fragile X syndrome. “When you have a diagnosis like this, it is so scary,” Chartouni-de la Serna said, reflecting on the experience. “We walked into that building feeling terrified and alone and lost and confused.
“Then you are at a place like the MIND Institute. They understand 100 percent right away and you have an automatic community. Now, I can call Randi any time I want. That’s just priceless,” she said.
Chartouni-de la Serna said that Calincito is improving every day and that her second child is a carrier for fragile X but is performing normally in his development.
She soon encountered other families in Florida affected by fragile X-related disorders, including Michele and Paul Kaplan and Mark and Kimberley Grimmel. These families also visited the MIND Institute. Together they and three other families affected by fragile X disorders founded the south-Florida-based Families for Fragile X. Chartouni-de la Serna serves as its vice president and Michele Kaplan is its president. The organization gives generously to the MIND Institute.
The support from Families for Fragile X has made a dramatic difference in the treatment studies that we are able to carry out for children with fragile X syndrome” Hagerman said. “We are forever grateful to them and their families. I look forward to the fundraising event they hold every year.”
We are very committed to supporting the MIND Institute’s research,” Chartouni-de la Serna said. “We are hopeful that we will begin to get some better treatments soon, so we’re very committed to Dr. Hagerman’s research.
"We give, not just because of what the MIND Institute does for us,” Chartouni-de la Serna said. “We do it because of what the MIND Institute does for the entire fragile X world.”