When Jacksonville parents Tessa and Daryl Gottlieb received their infant daughter’s diagnosis in 2021, the world as they knew it stopped spinning. At the time, FOXG1 syndrome was a term unknown to Tessa and Daryl, who also share a son Quincy, now 7, and a daughter Aislyn, now 2.
FOXG1 syndrome is a rare (ultra-rare, in fact) genetic condition that robs Aidyn Mae of her ability to walk, speak, or feed herself, and for which there is currently no treatment or cure.
“She has seizures, a feeding tube, respiration issues, gastrointestinal issues, severe sleep disturbances, a movement disorder that causes her to uncontrollably jerk her head and body, the inability to speak or walk, and unexplainable hours-long crying spells that leave us and her doctors lost for the cause,” Aidyn Mae’s mom, Tessa, explains.
Determined to change the outcome of their daughter’s diagnosis, the Gottliebs created the Aidyn Mae Hope Fund to support Believe in a Cure — a 501(c)(3) non-profit organization that funds intensive research efforts to treat and cure FOXG1 syndrome and support families in need.
“The Aidyn Mae Hope Fund has been so encouraging to us! We feel seen, heard, and understood. We feel that people want to support us, and most of all we feel connected.”
What started as a local family in need and an energized committee of friends, The Aidyn Mae Hope Fund raised an astounding $250K success in its first year. Tessa and Daryl express hope for the future.
“Every dollar goes directly to finding a cure through gene therapy research. Our doctors and scientists say it is not a matter of “if” gene therapy will cure FOXG1, but when.”
Human clinical trials are possible by the year 2027. But the Gottliebs can’t do it alone: “We cannot stress enough that we cannot do it without the community’s help.”
At Night of Hope 2024, the Gottliebs hope for another big impact — with the generosity of the Jacksonville community on full display: “This is the hands and feet of Christ at work, and we feel so loved through it.”
Three years after diagnosis day, Aidyn Mae’s bright smile — even through countless hours of physical therapy, doctor appointments, and sometimes serious health complications — is what keeps the Gottliebs hopeful, along with steadfast love from their supporters.
“We have shed many tears about Aidyn’s suffering, but she has also brought us great joy. Her smile and laugh melt us. She has brought us so much closer to Jesus, and she has shown us the incredible power of community,” says Tessa.
Hope shows itself in different ways. As a longtime friend of the Gottlieb family, who feels more like family to me than friends, it has been my honor to join this group of volunteers who share the same hope, through tangible efforts that make a real difference in the mission to treat and cure FOXG1 syndrome.
How You Can Help
Attend the Night of Hope 2024. Join us at Night of Hope 2024 for a fabulous evening of food, music, drinks, a silent auction, and more, on November 7, 2024, at the Garden Club of Jacksonville.
Become a sponsor. Interested in supporting our event and showcasing your brand or business? Please contact Holly Walsh at (512) 971-6957 or [email protected] about sponsorship opportunities.
Volunteer. Interested in becoming a part of the Aidyn Mae Hope Fund’s legacy of giving? We welcome all areas of skill and gifts of time! Please contact Aryn Lentz at (904) 451-2831 or [email protected] for volunteer opportunities.
Donate. If you are led to make a monetary contribution to the Aidyn Mae Hope Fund, please click here.
Stay up to date of Aidyn Mae’s progress, future events, and ways to get involved on Facebook, Instagram, and YouTube.
About the Author
The author is a Jacksonville-based mom of three, volunteer, and ride-or-die friend of Aidyn Mae’s mom, Tessa.
