Rancho Palos Verdes mom Jessica Patay has always found joy and rejuvenation in what she calls “Ya-Ya-Sisterhood” gatherings – warm and hilarious get-togethers with girlfriends over dinner or at the spa or on weekend girlfriend trips. She didn’t let becoming a mom put an end to these outings, but when her middle son, Ryan, was born with a rare, genetic disorder called Prader-Willi syndrome (PWS) 14 years ago, Patay and her husband Chris briefly considered heeding a few well-meaning loved ones’ advice to keep quiet about the diagnosis.
Utimately, the couple decided not to stay hush-hush, and today their family – which also includes their children Luke, 17, and Kate, 12 – talks openly about their joys and challenges. And Jessica Patay has allowed PWS to expand her girlfriend territory and impact. Last year, Patay founded the organization We Are Brave Together as a source of respite, resources and support for moms of children with disabilities.
How has PWS impacted Ryan?
PWS is a rare genetic disorder [that causes specific genes to lose function]. When Ryan was born, he had weak muscle tone – hypotonia. He couldn’t suck or cry for food. “Failure to thrive” is what it’s called. He spent a month in the hospital, with [medical professionals] trying to get his mouth to wake up. We ended up going home with him on a [gastronomy tube] because I needed to get home to Luke. He went through all kinds of therapies, and we were able to get him on a growth hormone, which is approved for PWS. If you can get started on it as an infant with PWS, it’s really, really helpful. In childhood at some point – age 2, 3, 4, 5 – starts the food drive, or hyperstasia, for these kids. This is where their bodies do not give them any satiety signals, and they become food obsessed. Most families have to lock their cabinets and refrigerator doors to [keep their kids from overeating]. We didn’t have to lock our cabinets until Ryan was 13. It’s been a slow burn. But the food drive is not as hard as the anxiety he has. He has the food drive plus anxiety plus academic challenges.
Why did you decide to be open about Ryan’s PWS?
One of my friends had said, “You know, Jess – this is big; this is life-altering. You’re going to alienate the people who want to support you if you don’t share.” This was before Facebook. We just emailed family and friends and shared with them. After we got [Ryan’s diagnosis], we got a phone call from the executive director of the [PWS] Foundation, and she said she lived 10 minutes away. She said I was not going to be alone, and I almost fell out of my chair. It was the biggest comfort.
How did PWS expand your girlfriend community?
I started going to the PWS [support group] meetings. And my best friend and I wanted to reach out and do something meaningful with special-needs moms. We said, “We’ve got to do girlfriend retreats with special-needs moms.” We Are Brave Together was born out of this beautiful collision.
Tell us more about We Are Brave Together.
My heart is to be able to reach all moms [who have kids with disabilities] and let them know they are not alone. Our website has resources for moms and our events. We are going to have Kitchen Chats on YouTube to discuss key topics. I’m doing this [as] a nonprofit because I want to be able to keep things low-cost and accessible to moms. For example, the retreat we did in Palm Desert last September only cost moms $100 for the weekend.
We are in the very, very beginning phase, but all of our documents [for nonprofit status] have gone to the IRS. There’s a board. We represent about 25 states right now, and have 350 members.
Why did you choose the word “brave”?
When you have a child with medical or cognitive challenges, there’s so much fear and worry that goes on, but if I band with you, along with other special-needs moms, then that empowers you to be brave in your journey. When you are with other moms who get it without miles of explanation, it’s so comforting.
For more information on We Are Brave Together, visit www.wearebravetogether.com.