The LivJoy Foundation was created to honor our daughters, Livia and Amanda Joy who both have Fragile X syndrome, the most common inherited cause of intellectual disabilities and intellectual impairment. Fragile X is caused by a single gene in the DNA not producing a protein crucial for neurological development and brain function. There is currently no cure for Fragile X.
Liv 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. No teacher, counselor, nor private therapist had answers for us. Amanda’s pediatrician prescribed ADHD medication which made 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 8 years old, she met with a new psychologist who suggested, “Maybe it’s inside her.” This led to genetic testing, which led to a diagnosis: Fragile X Syndrome. Our older daughter, Livia was also diagnosed with Fragile X, and Rachel, their mom, is the carrier.
After our daughters were diagnosed with Fragile X, we had more questions and concerns than answers. Online research only showed boys with Fragile X, most with far more severe issues affecting their daily lives. These were heart-wrenching stories, but they left us confused. Our story was different.
Our daughters’ presentation of Fragile X was incomparable to the stories we read. With no one to talk to for support and no real research available about girls with Fragile X, we ignored the diagnosis for many years. We didn’t tell their schools or anyone outside of our immediate family. We figured Amanda would outgrow her issues and thought the diagnosis was just a label that could hold her back. Plus, 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 apparent that she was not going to “grow out of her issues” or catch up to her peers. We had to do something.
We knew Amanda loved going to camp. She had made some real friends during her first couple summers at Camp Akeela in Vermont, a sleep-away camp for “quirky kids.” For Amanda’s 16th birthday we went to Boston so Amanda could spend time with three girls from camp. That weekend, for the first time, we watched her be herself, like a real teenager, laughing with friends and enjoying their time together. We realized she just needed to be with other girls like her. She needed to find her people.
With that realization, we decided to move from Florida to Boston. Amanda’s people were in Boston. Our family had connections there. (It’s also where Brian and Rachel met!) And 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. While we did not meet anyone else with Fragile X, the students at this school were all very similar to Amanda: high functioning, well behaved, but socially incapable of thriving in a traditional school setting. Amanda immediately fit in 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!
Since our move, we have learned so much about children with special needs, their families, and the programs available to them. Both of our girls are now in a good place and on a path towards independent adulthood. Liv has graduated from college and holds a full time job working at a hotel. Amanda is now enrolled in Threshold at Lesley University, a college transition program that focuses on teaching life skills and helping students with diverse learning profiles. Our story as a family is still unfolding, and now LivJoy is a part of it, too.
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 landing point we wish we’d had when searching for answers for our girls. We hope it helps families at all stages of diagnosis and life find both resources and reassurance that there are other people going through the same experience.