At just four years old Ada Jordan, has become both a fighter and a nurturer through her journey with epilepsy.
On the week of her very first birthday, Ada was diagnosed with epilepsy. She began to deal with many complex partial seizures, a type of seizure that originates in a specific part in the brain. This type of seizure can cause 30 second to two minutes of seizure indicators including staring off and moving unusually or involuntarily. Ada’s parents shared that their daughter’s seizure activity became more difficult to control. After a month-long stay at Boston Children’s Hospital, the right combination of medication was found to Control Ada’s seizures.
Unfortunately, a year later, the medications regimen became less effective for Ada’s seizure activity. Her seizures returned and intensified over the following months. It was decided that she required a more involved intervention for seizure control. In 2023, Ada underwent brain surgery. Only a few years into life, Ada was already showing incredible bravery.
Ada has been seizure free since her surgery. She and her family are grateful that this operation was successful in Ada’s journey with epilepsy. Although she continues to take seizure medication, she is going through the process of weaning off them and was able to stop using one of the three of the prescriptions altogether.
Ada’s family shared that she is growing into a kind, helpful, empathetic young girl. Her life experiences have shown her the importance of being there for anyone going through adversity. Ada has a little brother named Charles, who she is also happy to help support and care for.
“Ada hones in on anyone in the room who may have an injury or hardship. Noticing band aids, casts, wheelchairs, and walkers quickly, and eagerly wanting to check on those people to see if they might need help,” her parents stated.
Ada’s parents also reflected upon how Ada can face her fears with courage when dealing with medical needs, being “incredibly stoic and brave in the medical setting, watching intently whenever she has labs drawn, or vitals done,” they said.
Since her surgery, Ada’s family has participated in the EFNENY Walk to END EPILEPSY and started their own fundraising effort by leading “Team Ada.” They shared their excitement to attend more EFNENY events and stay involved with the epilepsy community!
Ada’s power to turn her own challenging experiences into kindness and compassion is one of the reasons that EFNENY is proud to have selected Ada as one of our two Winning Kids for 2025! Ada’s perseverance and drive to help others will be honored at our 37th Annual Confections in Chocolate Gala for Hope. Ada and her Co-Winning Kid, Adaline Casey, will be recognized at the gala on March 29th at Birch Hill in Castleton-On-Hudson.
What does Ada and her family think everyone should know about epilepsy?
“A quote our family relates to when reflecting on Ada’s battle goes as follows:
‘Fate whispered to the warrior, ‘You cannot withstand the coming storm.’ And the warrior whispered back, ‘I am the storm.’
Ada would like others to know the battle with epilepsy is often a daily one, but the warriors who fight it are mighty and resilient. She is the storm!”
