Born in September 2011, Elise Bonsky is a bright, vibrant 8 year old. Early in life, she suffered from a few developmental delays and seizures, but while the Bonsky family made sure she didn't outgrow her dosage of Keppra and had annual MRI's, they had little cause to suspect she might have a devastating underlying condition. Then, in November of 2014, the Bonsky family received a phone call from her local neurologist that changed everything. The tone of voice said it all: Something in Elise's MRI had changed and they needed to get to the hospital as quickly as possible.

They didn't know what it was, but they knew it was serious. Then, in the office, the doctor gave them the news: he suspected Alexander Disease. He had written it on a tiny slip of paper, in all caps.

"Leading up from that phone call to when we were sitting in his office at 9 o'clock the next morning was so much build up, it was almost like you're blowing up a balloon and how much more can you take? All of the sudden it was like the balloon popped and everything came out. It's the truest form of complete and total heartbreak I can ever... I can't even put into words how I felt. It was the worst thing I can imagine. -Jen Bonsky"

It took 3 weeks for genetic testing to officially confirm the diagnosis. Jen and Chris Bonsky's first question was: How and Where do we get the best care for our daughter? When they scoured the internet and came up empty-handed, their mission became finding people who could help.

Through a happy coincidence, or perhaps fate, an old family friend who previously worked at Children's Hospital of Philadelphia called to reconnect with Elise's grandfather. It wasn't long before the Bonsky's received a call from Amy Waldman, pediatric neurologist at CHOP. This moment gave the family a renewed sense of hope. Dr. Waldman said, "you keep that girl as healthy as you can for as long as you can," explaining how quickly treatments were progressing. This moment planted the seed of hope that has grown, leading them to start a foundation in Elise's name, raising well over a million dollars and helping start the Leukodystrophy Center for Excellence.

Now, Elise is happy and thriving. She continues to go to therapies and loves playing with her little sister Emmersyn and the family pets, Cubby and Blue.

The Bonsky Family continues to lead the charge to raise funds and find an effective treatment, not only for their daughter, but for everyone living with Alexander Disease.