A Palos Verdes Resident Helps Other Mothers of Children with Special Needs and Fosters a True Sense of Community
Power In numbers.
Jessica Patay, founder and executive director of Palos Verdes–based nonprofit organization We Are Brave Together, knows life can change in an instant. She remembers that moment clearly from 18 years ago when she was in the hospital following the birth of her second son, Ryan.
“I had a typical healthy pregnancy, labor and delivery. When Ryan was born, he cried for maybe five or six seconds. It stood out to me, and I thought, ‘Well, maybe I have a really quiet newborn.’ I already had a 2½-year-old son, Luke, so I had been through that process,” recalls Jessica. “[Ryan] had some breathing issues and medical issues, but it was kind of a blur that first day.”
Exhausted, overwhelmed and confused, Jessica spent a month in the hospital with Ryan—not knowing the diagnosis—while her husband, Chris, spent hours researching the symptoms and consulting with doctors. About a week after they were sent home, their pediatrician confirmed the answer: Prader-Willi Syndrome, a complex, rare genetic disorder commonly characterized in infancy by diminished muscle tone, failure to thrive, poor development and later an insatiable appetite that can lead to death.
“Having that answer was very scary because we weren’t surrounded by anybody with children with disabilities or rare diseases,” explains Jessica. “It set us on a path to frame it and understand it.”
“To look moms in the eye or share online and say, ‘You are not alone,’ and for them to say that they don’t feel alone anymore, is fuel for my soul.”
Right away, she and Chris knew they wanted to learn everything they could and sought help and resources from the Prader-Willi California Foundation. Just a week after learning his initial diagnosis, they received a phone call from a local “mentor mom,” Lisa, who had a son five years older with special needs and who only lived 15 minutes away.
“I still get choked up to this day talking about it,” recalls Jessica, who also had a daughter, Kate, two years after Ryan. “I thought, ‘Oh my gosh, I’m not going to be alone.’ That mentoring that we received and the support groups that we attended and meeting all of these other families in L.A. and the South Bay—that made all of the difference.”
Jessica, who along with her best friend previously organized girlfriend retreats throughout the country, knew she wanted to do something for special needs moms and began scheming. “I believe so strongly that when women come together, we have so much to offer each other,” she says. “I wanted to offer retreats to the moms of special needs children for them to have support, validation, breaks and respite, and mentoring.”
Because she knew the overwhelming aspect of daily caregiving tasks, medical appointments and IEP meetings, Jessica thought she could fill a need. A year later, she had her first launch party in 2017 for We Are Brave Together in her own backyard with 50 to 60 women.
“It was so very clear the need was there and moms were truly hungry for support, community and retreats,” she says. “We welcome any mom to any child, any age with any diagnosis, disability or challenge including educational and mental health challenges, and if a mom has a child with medical or special needs and no diagnosis, she is welcome to be a part of the sisterhood and tribe. So it’s a really big umbrella, and we are very inclusive.”
In 2018, the organization achieved nonprofit status and has grown from 125 moms to 1,325 internationally. Jessica also launched a podcast, Brave Together, last year—addressing everything from compassion fatigue to mom guilt syndrome. “To look moms in the eye or share online and say, ‘You are not alone,’ and for them to say that they don’t feel alone anymore, is fuel for my soul.”
Now more than ever, Jessica knows she’s landed in the right place. “Ryan has changed us all for the better, and I’m so grateful,” says Jessica. “We Are Brave Together has brought me so much purpose. I knew something had to come out of this, and it did.”