Meet Rooney

Born in The City, raised in Cayucos, Rooney is the first born daughter to Rusty and Renee Roquet, granddaughter to Rick and Rebecca of the Seaside Motel. Shortly before her second birthday, Rooney was diagnosed with a CASK gene disorder; a spontaneous disruption on her CASK gene causing global delays.

Taking her first step at the age of three, and learning to navigate this beautiful world without verbal words, Rooney is a radiant light to those who know her, and shining example of perseverance.

Rooney is one of less than 600 reported cased in the world, with a CASK gene disorder which doctors classify as a "unicorn." In August of 2023, her mother Renee, along with New York native and CASK mama Hitomi Kubo, co-founded the non profit Project CASK building a team of parents, outlining am ambitious business plan in effort to find treatments and a cure for CASK.

In two years Project CASK has raised over 600 thousand dollars and are currently funding six research projects for CASK.

Read more about Rooney's story, from her mama

I remember the day we received the call from the geneticist. It was the 3rd of July. Which as any Cayucucan knows, is basically Christmas Eve.

Outside the streets of Cayucos were buzzing, alive, with fourth of July energy, the smell of backyard barbecues wafted through the open windows, and the wayward daytime firecracker could be heard between the crashing of waves .

Rooney sat on the floor next to me with a golden glow from the sunlit window behind her, illuminating her blonde ringlet pigtails and causing a glisten her stunning sea blue eyes. She was bouncing on her knees, waving her little hands like butterflies, when I called Rusty into the room and put the phone on speaker.

The doctor had never heard of the CASK gene and relied on google, to share what our daughter’s future might look like. I could sense my ears allowing his words to echo through my head, while a protective steel shell closed around my heart, and a fire, and a roar, began to brew inside me.

Rooney was a unicorn he said. So ultra rare, there were less than 50 published cases, world wide.

Microcephaly. Hypotonia. Nystagmus. Intellectual disability. Watch out for scoliosis, hip dysplasia, and epilepsy.

He said Rooney would likely never sit on her own, crawl walk or talk.

There are no treatments, no cures, and no one, was coming to help her.

I began my journey as a rare disease mama.

Flash forward nine years later, and I have met the most motivated, passion-driven mothers and fathers with whom I have had the honor to co-found the non-profit Project CASK.

Together we are taking this maddening diagnosis head on, and breaking down barriers placed before us funding four studies for CASK, including a promising gene replacement therapy.

Thank you for being here for Rooney. Thank you for being here for the nearly 600 CASK Liocorns affected by this disorder. Your support truly means the world to my family and beloved CASK community.

Much love,

Renée, Rusty, Rooney & Henley

The Liocorn's story

Some say our kids had a better chance of winning the Powerball than being born with a CASK gene mutation. Some in the medical community call our kids "unicorns."

Unicorns are rare, magical, pure and innocent. That sounds a lot like our kids.

But there is so much more within our children, our families, and our community. We possess the tenacity, strength and courage of lions. A fierce determination to move mountains to help our kids reach their true potential. And from this, our spirit animal, the Liocorn was born.

About the CASK gene

Children with CASK gene disorders face a range of complex challenges, including motor and sensory difficulties, epilepsy, feeding issues, and significant developmental delays. The disorder can be life-limiting and symptoms can vary widely from person to person. Because the CASK gene is X-linked, developing effective, targeted treatments is especially challenging.

Project CASK

Project CASK is a nonprofit organization committed to developing treatments and finding a cure for CASK gene disorders— ultra-rare, severe conditions affecting brain development that currently lack any available therapies.

Since its founding in August 2023, Project CASK has changed the landscape of therapeutic development for CASK disorders by kickstarting the first gene replacement therapy at Baylor College of Medicine, funding a small molecule study to improve brain function, and supporting the first comprehensive epilepsy study on CASK.

Our mission is simple yet ambitious: to give people affected by CASK gene disorders the chance to live full, healthy, and more independent lives. Through strategic partnerships, a focus on community-building, and a relentless pursuit of scientific progress, we are moving closer to that goal every day.

Thank you for supporting our CASK Liocorns and Project CASK, and being part of our journey to bring hope and healing to children and families affected by this ultra-rare disorder.

Cayucos Sip & Support

By Project CASK

Cayucos Sip & Support

A benefit for Rooney and her kick CASK (gene) friends