Meet Brynn

Brynn was born on May 4, 2024. She passed all of her newborn screenings and appeared to be a healthy baby at birth. The nurses told us they thought she would have strawberry blonde hair, but as the months went on, it turned into full red hair.

Brynn was a happy baby. She started off hitting all of her milestones until about nine months old, when we began to notice subtle delays. She never took a liking to food or different textures other than formula.

In March 2025, Brynn had her first seizure. Doctors called it a febrile seizure because she tested positive for a virus at the time. After a follow up with her pediatrician, we agreed there might be more going on given her developmental delays and the seizure. Referrals were sent to various specialists.

We met with a neurologist in June. Brynn had an EEG that showed no seizure activity and an MRI was scheduled for September 2025. In the meantime, we began therapies.

In August 2025, Brynn experienced a prolonged seizure without any accompanying virus. The local hospital decided to transfer her to a children’s hospital about two hours from home. While there, the MRI was completed and showed abnormalities in her brain. Genetic testing was started in the hospital and finalized after discharge.

It was a long and grueling month waiting for results. When the geneticist confirmed Alexander Disease, our hearts shattered and our lives changed forever.

Despite this devastating diagnosis, Brynn continues to show us how strong and stubborn she is. She is full of smiles and laughter. She has learned to crawl and gets into everything. She is her older sister’s best friend and our family’s pride and joy.

Brynn continues weekly therapy and sees multiple specialists in New York State as well as at Children’s Hospital of Philadelphia. She has a huge support system and does not fight this battle alone. Brynn’s fight is our fight too.