Motherhood is one of the most rewarding and most challenging journeys a person can take. Add Usher syndrome to that journey, and the road looks a little different. The progressive loss of vision and hearing that comes with USH can make everyday moments of parenting feel more complicated, more isolating, and sometimes harder to navigate without someone who truly understands.
That's exactly why Awesome Moms with USH exists.
Awesome Moms with USH started five years ago as a private, supportive community of mothers living with Usher syndrome. They connect through a private group and regular Zoom meetings, a space built around honesty, shared experience, and the kind of understanding that only comes from someone who is living it too. Membership is open by request, and the community spans mothers at every stage, from newly diagnosed moms with young children to experienced moms whose kids are grown and who now show up to offer guidance and perspective to those earlier in the journey.
We asked members why they joined and what the group means to them. Their words say it best.
"While everyone's USH experience is different, and everyone's motherhood experience is different, it's still so helpful to have a community of USH moms to reach out to for support, advice, and connection." — Sarah Turner, USA
"This group has shown me that I am not alone, and that having Usher syndrome does not define my worth. It has reminded me that I can still live a meaningful life and be a positive role model for my children." — Mel, Australia
"It's a safe place where we can share our challenges and frustrations, ask questions, celebrate the wins and laugh. Because we all get it! We're not alone." — Lynne Gilpatrick, FL
"Together, we provide mutual support, forming pillars that underpin our lives. As mothers living with Usher syndrome, we embody a diverse spectrum of ages, experiences, perspectives and ideas. Honouring motherhood with a common bond." — Rose Kamma Morrison, Visual Artist
"Motherhood is a challenge in itself. But it's a whole different journey when you add Usher syndrome to it. These awesome moms…we UNDERSTAND EACH OTHER." — Andi Horstkotte, TN
"My 'children' are grown and out of the house now. I joined this group because I felt I could offer firsthand advice to other amazing USH moms! We are not alone." — Dawn Hilaire, North Port, FL
"Although I've only joined this group two years ago, I feel like I've known these women all my life! No judgments, just others who simply get it!" — Carolyn, Middletown, NJ
"Awesome Moms with USH has a special place in my heart. There aren't many people who know what it's like to experience life the way we do — but somehow, we found them in this group, and that makes my heart happy." — Tara Bowman, Admin, Awesome Moms with USH & Board of Directors, Usher Syndrome Coalition
"Meeting these amazing women, both online and in person, has truly changed my life. It fills my cup in the best way." — Amy Patton, TX
"Being a 'special needs' mom isn't for the faint of heart. My USH diagnosis came long before becoming a parent, and being part of this unique group brings SOLIDARITY and AFFIRMATION into my life. So grateful!" — Kate Hordichok, USA
"Helps me stay connected, supported and confident as I continue to adapt to hearing and vision loss." — Karen, Utah
These voices come from across the United States, Canada, and Australia, from mothers in different stages of life, with different USH types, and different family situations. And yet, the thread running through every single response is the same: connection. Understanding. The relief of not having to explain yourself to someone who already gets it.
As Danay Trest put it: "The assurance of being understood and supported brings comfort and strength when needed. Ushers got us, and we've got each other."
That is what Awesome Moms with USH is all about.
Want to join?
Awesome Moms with USH is open to mothers living with Usher syndrome. To request access to the private Facebook group or WhatsApp group and be included in Zoom meetings, contact Meagan Moore at ambassador.or@usher-syndrome.org
To learn more, visit the link to this YouTube video of some group members talking about how Awesome Moms with USH got started and the impact it's made.
You are not alone. There's a group of women out there who already understand exactly what you're carrying.
Disclaimer: The information and resources on this website are provided for educational and informational purposes only and do not provide medical or treatment advice. Check out our mental health resources page on our website.
