New Jersey moms Taryn Lagonigro and Jess Quarello were strangers on separate pregnancy journeys when they each received news that their daughters would be born with Down syndrome. At the time, the moms — both of whom already had other children — tell LittleThings that they felt extremely isolated, as if each was the only family currently receiving this diagnosis. According to the Centers for Disease Control and Prevention, each year about 6,000 babies born in the United States have Down syndrome. Lagonigro and Quarello had a community of moms out there to connect with, but it wasn’t until fate brought the two of them together that they were able to form Extra Lucky Moms, a space for special needs moms to get inspired, be seen and heard, and advocate.
“We me through a group of moms in the Down syndrome community and our girls wound up going to the same early intervention program in New Jersey for children with Down syndrome, called Stepping Stones,” Lagonigro tells LittleThings. “We both shared a passion for advocating on a broad scale and found that there was a gap for finding a space where all disabilities could be celebrated, supported, and educated about.”
Lagonigro’s daughter Rhea, age 3, and Quarello’s daughter Adeline, age 2½, both have Down syndrome, but Extra Lucky Moms welcomes families with other disabilities as well.
“Extra Lucky Moms celebrates Down syndrome, autism, Jordan’s syndrome, multiple trisomies, cerebral palsy, CdLS, and many rare chromosomal deletions or diversions, to name a few,” Quarello says. She’s also mom to Charlee, age 5.
Rhea is Lagonigro’s fourth child. Rhea’s sisters are 11-year-old Sofia, 9-year-old Layla, and 5-year-old Genevieve.
“Navigating a new diagnosis is extremely overwhelming,” Lagonigro says. “As you’re managing your own emotions and maybe some grief, you’re also trying to navigate systems, therapies, appointments, and other things your child may need. It was finding community that started to change things, but it was truly leaning into community where the real change happened. Being a part of community is one thing, but allowing yourself to feel vulnerable and lean on your community is where you form lasting friendships and feel so much less alone.”
Along the way, they’ve faced misconceptions. “The most common misconceptions are that there is a one-size-fits-all version of a particular disability,” Lagonigro says. “Sometimes people, even medical professionals, think that everyone with that disability will follow the same path and go through the same things. It’s important that we view each child as a unique individual. Their disability is part of them, not all of them.”
Quarello agrees that some of the biggest challenges that moms in the disability community face are “juggling many appointments, hospital stays, medical needs, and school meetings.” She adds, “The broader challenge is breaking down stereotypes and misconceptions that come along with their child’s disability, capabilities, and place in society.”
Extra Lucky Moms is making such an impact that Lagonigro and Quarello were invited to appear on the Today show. “It still feels unreal,” Lagonigro says. “Our social media growth has been one thing, but the other really wonderful thing about having been on a show like Today is that it’s been really validating to others on the importance of our mission. We’ve had so many more doors opened for some of the programs that we offer, especially our corporate education program, where we share with employers and employees how to provide and find support on this journey.”
“What we didn’t expect from when we started Extra Lucky Moms was how much we would learn,” Quarello says. “There are so many disabilities that we didn’t know about before we started, and it’s been such a joy to see how many amazing children and parents there are out there doing some awesome things.”
Along the way, they’ve found what works best for themselves and their families. “We have learned to take things one day at a time, and it’s probably the most important piece of advice we can give,” Lagonigro says. “Living in the future is not productive for anyone, especially in our community. There is no crystal ball that tells us how anyone’s future is going to be, whether that is our neurotypical children or our children with disabilities. Staying present is where we can enjoy the everyday moments and wins for our children.”
While they’ve learned how to best take care of their children, they’ve also had to navigate a new way of self-care. “The only way that taking care of ourselves works is when we make it a priority,” says Lagonigro. “That doesn’t have to look fancy. Maybe it’s getting up a little earlier than everyone to enjoy your coffee hot, or maybe it’s finding one hour a week when you have some help to go do something for yourself, but working with your support network — spouse, partner, family, friends — to make sure that this time happens is key. Only you can know what you need to feel your best self.”
Extra Lucky Moms helps special needs moms navigate daily life, and it’s also a resource for women who get a diagnosis during pregnancy. “First and foremost, we want someone who gets a new diagnosis to know that everything that they are feeling is OK, even if some of those feelings are hard,” says Lagonigro. “Just like there’s no one-size-fits-all version of a disability, there’s no one right way to come to terms with your child’s diagnosis. One of our favorite phrases is ‘you’ve got this,’ because we know that mama will be OK, and we want her to feel encouraged and supported on this new journey.”
To help support the women whose shoes they were once in, Lagonigro and Quarello are publishing their first compilation book, Dear Mama: Stories of an Extra Lucky Life, this spring. It’s a collection of letters written by moms in the disability community, writing to moms who just received a diagnosis.
“We like to think of it as a Chicken Soup for the Soul for the disability community,” says Quarello. “These are real, raw stories of hope and meant to help a new mom feel validated and supported. We hope that anyone who picks up the book will feel inspired by these stories, and also learn a little more about the disability community and what these moms feel as they raise their children.”
