Olivia's Story

On January 17, 2023, Olivia was diagnosed with the ultra-rare genetic disorder called GNAO1. The visions and plans we had for our family changed that day, and life as we knew it was going to look a lot different. With the disorder only being discovered in 2013, the diagnosis came with many unknowns, countless questions, emotional pain, and an incredible amount of fear. 

Through all of Olivia's appointments, procedures, therapies, and hospital visits, Olivia has always shown us how to fight. She fights every day to do the simple things that many of us take for granted, and she does it with a smile on her face and an infectious laugh. She has inspired us to turn our fear into fight because after all, her fight is our fight!

Olivia's variant is G204S and as far as we know right now, she and a little boy in England named Joe, are the only two of that specific variant. When it comes to Olivia, she cannot self-feed, crawl, sit independently, or walk. She has some words but is mostly non-verbal and is beginning to use a Tobii Dynavox device where she can look at pictures/phrases and it will speak for her. We attend a minimum of 2 PT, 2 OT, and 1 Feeding / Speech appointments weekly, which is outside of the specialists and hospital visits we regularly have to attend. She has received rounds of Botox for the increased tone that can be common in GNAO1, and discussions have been had about tendon lengthening surgeries for her leg tone, implanting a feeding tube because she burns too many calories vs food intake which has made her weight gain almost impossible, and potentially a brain surgery to implant a device to control her involuntary movements from getting too severe. We have become very familiar with Boston Children's Hospital. 

As mentioned above, even in the face of all she has to go through, Olivia is so happy. Olivia loves music and colors, singing and dancing, her cat Nala and dog Nova, and LOVES Ms. Rachel and Disney princesses. Olivia has the most infectious smile and laugh. She has been given a tough hand in this crazy thing called life, but she makes the best of it - always with love in her heart.

It all started in 2022 when a former student of Jordan's (Ella) held a fundraiser for Olivia and our family. We were so blown away with the outpouring of love and support, and we could not believe the kindness from a 16-year-old. 

We knew we had to pay this kindness and love forward, so in 2023 we hosted a fundraiser with the goal of donating 100% of the proceeds to The Bow Foundation in order to help support their efforts in funding groundbreaking research into GNAO1. It was a resounding success, and once again, the love and support were unparalleled.

The more we learned about GNAO1, the efforts of The Bow Foundation, and the efforts of other families doing their own fundraising, we knew we wanted to help. We wanted to help Olivia and all of the GNAO1 warriors. 

Olivia's Fight is Our Fight! 

Their Fight is Our Fight!

Due to this, in early 2024 we created The Olivia Joan Foundation - a 501(c)(3) Non-Profit, with the goals of funding GNAO1 research, providing scholarships to both neurotypical and neurodivergent students, and to raise awareness about GNAO1.