A Cayucos mom is working to raise awareness about her daughter’s rare genetic disorder, and the community has a chance to help support her efforts this weekend by bidding in a rare art auction.
CASK gene mutations affect brain development and can lead to microcephaly and intellectual disabilities.
When Renée Roquet’s daughter, Rooney, was diagnosed at the age of 2, their doctor warned that the little girl may never crawl, walk or talk and may suffer from nystagmus, scoliosis, seizures and other symptoms.
Roquet says there was very little known about the disorder at the time. There were no pamphlets she could take home or easily accessible parent support.
“In the years following, my husband and I would be the ones to tell the doctors about our daughter’s diagnosis, what we need to watch out for, and updates on any minimal research occurring,” she said.
A year ago, Roquet met another parent whose child was diagnosed with a CASK gene disorder. Together, they started a podcast that led to the creation of Project CASK, a non-profit whose mission is to support research to develop treatments and an eventual cure for CASK gene disorders.
One of the non-profit’s initiatives is the Ultra Rare Collection, an online auction of “ultra rare art.”
What makes this art so rare? The subject of each piece is the “Liocorn,” Project CASK’s spirit animal which was inspired by their motto, “Rare as unicorns. Strong as lions.”
Artists include Rollie Krewson, Master Puppet Designer and Builder at the Jim Henson Company, Cal Poly graduate Sierra Evans, and nearly two dozen others.
The money raised by the auction will fund research into CASK gene disorders.
Now 10 years old, Roquet says Rooney is still not talking but communicates effectively in other ways and learned to walk by the age of three.
She describes her daughter as the most loving, connected, and perseverant person she knows.
“She has enabled me to become a mother and a woman I never knew I was capable of, in my pursuit and advocacy for her health, and happiness,” Roquet said.
The online auction is taking place now through Sunday, December 10. Click here to view the artwork and make a bid.
