Livia and Amanda Joy were born in Boca Raton, FL. As toddlers, they each experienced some level of developmental delays. Both walked late, and Amanda had delays talking as well. Liv quickly caught up, but for Amanda, the differences only became more apparent as she grew up and fell further behind her peers socially. In school, Amanda had difficulty focusing and was hyperactive, but it was always happy energy. Teachers, counselors, and therapists had no answers. Her pediatrician prescribed ADHD medication, which left her lethargic and “zombie-like.” We felt like we were medicating Amanda so that others could deal with her, despite not knowing what was causing her behavior.

Finally, in 2010 at age eight, a new psychologist suggested, “Maybe it’s inside her.” Genetic testing confirmed a diagnosis of Fragile X syndrome. Livia was also diagnosed, and Rachel, their mom, is a carrier.

Our Story Was Different

After our daughters were diagnosed with Fragile X, we had more questions and concerns than answers. Online resources focused almost exclusively on boys with Fragile X, many with far more severe challenges. While those stories were heartbreaking, they left us confused. Our daughters’ experience was different.

The girls’ presentation of Fragile X didn’t match what we read. With little research or support available specifically for females, we kept the diagnosis private for many years — not telling schools or anyone beyond immediate family. We hoped Amanda would simply outgrow her issues and worried the label might hold her back. Livia seemed to be doing OK. Sure, she was quirky and struggled with math, but overall, she was not much different than a typical girl her age. 

By the time Amanda reached high school, it was clear she would not “grow out of it.” We knew we had to act.

Amanda had always loved camp. She made real friends during summers at Camp Akeela in Vermont, a sleep-away camp for “quirky kids.” For her 16th birthday, we took her to Boston to spend time with three camp friends. That weekend we saw her truly shine — laughing, connecting, and behaving like a real teenager. We realized she simply needed to be with others like her. She needed to find her people.

That realization led us to move from Florida to Boston in 2019. Amanda’s people were in Boston. Our family had connections there. (It’s also where Brian and Rachel met!) Massachusetts is a state that values education and is home to world-class medical research and care. All the pieces we needed were in one place.

This move changed our lives, and, in fact, it gave new life to our girls. Amanda enrolled at Learning Prep School in West Newton, a school that supports kids with special needs. Though we didn’t meet other families with Fragile X, the students were very much like Amanda — bright, well-behaved, high-functioning, but socially challenged in traditional settings. She fit in immediately and felt comfortable among her peers for the first time. This was enlightening to us. Finally able to speak with other parents about the issues our kids face, we found our voice; we were no longer alone. We had found our people.

Where We Are Today

Since our move, we’ve learned so much about supporting children with special needs and the power of the right programs and community. Reaching this point has taken dedication, hard work, and the vital support of many caring professionals along the way. Both of our girls are now thriving - Liv graduated college cum laude and works at a prestigious hotel, while Amanda successfully completed the Threshold program at Lesley University and is working as a pharmacy technician. Their journey toward greater independence is ongoing and will always be a work in progress, but we are incredibly proud of how far they have come. Our family’s story is still unfolding — and LivJoy has become a meaningful part of it.

We founded LivJoy in 2023 to find, fund, and share programs that enable girls with Fragile X Syndrome to live a life full of joy. It is the resource and community we wish we had when we were searching for answers for our girls. We hope it helps other families — at every stage of diagnosis and life — find both practical resources and the reassurance that they are not alone.

LIV & JOY