Jane was born a healthy full term baby until her blood sugar plummeted 3 days into life, causing detrimental seizures. Her blood sugar issue eventually resolved, but her ongoing seizures remained. Jane, now 3 years old, carries a life long seizure disorder most closely resembling Lennox-Gastaut Syndrome, causing intractable epilepsy that has left her immobile, mostly blind, reliant on a gastrointestinal feeding tube and living with developmental delays. In the midst of her battle with epilepsy, Jane’s speech is emerging, she just started school, and she loves to swing, laugh, and the sound of her family’s voices. You can follow Jane’s story more closely at HilaryHarris.org
Mareena was just 10-months old when she had her first seizure. However, since Mareena was developing normally, her pediatrician said it was a fluke and she would grow out of it. In spite of specialized diets and anti-seizure medications, her seizures became more frequent and severe. By age four she was having up to 20 seizure a night. It was when she hit her head on the tile floor during a seizure, her parents knew it wasn’t a fluke. It was then they were connected to The Epilepsy Support Network of Orange County where they were referred to Dr. Mary Zupanc, a leading Pediatric Epileptologist. They were told brain surgery was the best option to save her life. Five years post-surgery, Mareena is now an active third-grade student passionate about school, cheer and dance and she performs at grade level. She has a full-time aide and speech therapist. They expect assistance to taper down in the near future.
Read more about Mareena’s story »
Alix and Healey
Alix had her first seizure at eight years old. Her epilepsy battle continued until the beginning of her senior year when she went into status epilepticus, a condition that occurs when a seizure lasts too long. The 2 week coma-like state left her weak and shaky. Determined to expand her independent life, she applied for a service dog through the Atlanta based non profit, Canine Assistants. She bonded immediately to Healey, who alerts her when a seizure is coming. Alix says her seizures have lessened in severity and duration since Healey’s arrival. Alix and Healey are celebrating 5 months of seizure freedom and inspiring other Warriors to have service dogs of their own.
April 15, 2012 – March 10, 2016
Dani was diagnosed with Infantile Spasms at just six weeks. It was a completely healthy pregnancy and birth experience and then at six weeks this catastrophic form of epilepsy came like a thief in the night. At first, they looked like little twitches which many times get overlooked by parents and doctors as newborn startle reflex or GERD. Her mom knew something wasn’t right.
Doctors had her start on ACTH injections, which is the frontline treatment for Infantile Spasms. When the ACTH failed, they were onto the second line of treatment, Sabril. It was the worst time of their lives; their smiley baby was now having 100s and 100s of seizures a day and they were running out of options. Every single day they would helplessly watch their daughter as she seized. At six months, Dani became the youngest patient their doctor ever started on the ketogenic diet. It was their miracle, but by that time the damage had been done. It brought Dani’s seizures from 100s a day to single digits. Her parents were told she would never walk, talk or even see.
We wish there was better news to share about Dani. We wish we could tell you that Dani was walking or reached some huge milestone. However, Infantile Spasms caused so many complications that it cost this little warrior her life. It is so important to bring awareness to Infantile Spasms. Little seizures, BIG consequences. Even though her parents have no regrets on wasted time or not getting the right treatments, many have to deal with those regrets because of doctors misdiagnosing. More than one third of patients die from Infantile Spasms.