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Naomi Johnston

@knowledgefornaomi

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followers

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🌻 Rare warrior #CTNNB1!
🤍 Cerebral palsy
🌻 sharing our journey and all of Naomi’s hard work
🤍 Stronger everyday
🌻 account run by mom & dad

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Thank you to these incredible ski instructors for their love and passion for all of the @wheelchairs4kids. Naomi had a once in a lifetime experience and we are forever greatful for everyone who helped make this happen. #glittergirlsforever #ctnnb1 #adaptiveskiing #boec #wheelchairs4kids taken in Breckenridge, Colorado by @knowledgefornaomi

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7 months ago

So honored to share our story and love for Naomi’s team. Thank you @tampabaytimes for capturing the love we have for the @tampabaysunfc and @tampabaysunfoundation and Naomi’s journey. Thank you @sydny_naselloo for always making Naomi feel like she is on top of the world. And a special thank you to @iamracheljolley for making this connection and seeing something that extra special in our little lady! We love you and are so grateful for you! taken in Tampa, Florida by @knowledgefornaomi

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9 months ago

We first met the Johnston family through our partnership with Johns Hopkins All Children’s Hospital in St. Pete last season. Their connection to the Tampa Bay Sun Foundation has grown into something truly special.

Naomi was introduced to the team during an 8-week therapy program for CTNNB1- an unforgettable day when Sun FC players came to play soccer with the kids. From that moment, she was all in⚽️

“As one of four sisters, Naomi has spent so much time cheering on others. The Sun became something just for her- a place where she’s seen, celebrated, and included,” Naomi’s mom, Chrissy, told us.

After that first visit, she was invited to do the coin toss at a game, and according to Chrissy: “Naomi lit up like never before!”

The Sun Foundation and players from Sun FC continue to follow Naomi’s journey, cheer her on, and let her know she is forever part of the team.

“This connection showed us what true community looks like: kindness, joy, and shared passion,” Chrissy said. “It’s not just about soccer. It’s about being part of something bigger than yourself. You don’t have to walk to play a sport, and you don’t have to be without limitations to chase your dreams.”

We’re so grateful to the Johnston family for sharing their story— and for letting us be a small part of their world☀️ by @knowledgefornaomi

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a year ago

Naomi was all smiles at her check-up at Zizic & Salata Dentistry! 🦷✨ She did an amazing job sitting through her X-rays, a full cleaning, and a fluoride treatment like a champ. Also, ZERO cavities for this dragonfly! 🫶🏼

Thank you to the kind and patient team at Zizic & Salata for making her feel so special and comfortable. by @knowledgefornaomi

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a year ago

Jumping on the TikTok trends! #iwokeupinanewbugatti #knowledgefornaomi #raredisease #inclusion taken in Chicago, Illinois by @knowledgefornaomi

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a year ago

✨ July 25th ✨
Today we’re celebrating a very special day — CTNNB1 Awareness Day and Naomi’s 1/2 birthday! 💛

Naomi shares her day with all her fellow dragonflies — the brave and beautiful children and families affected by CTNNB1 Syndrome. This rare genetic disorder impacts a gene important for brain development and communication between cells. It can affect speech, mobility, and overall development — but it never affects the strength, light, and love these kids shine into the world. 💫

Naomi has taught us more about resilience and joy than we ever imagined. She works so hard each day to chase her goals (like walking independently!) and she does it with a spark that reminds us just how powerful love, support, and hope can be.

Join us in spreading love, learning more, and lifting up every dragonfly kid out there by @knowledgefornaomi

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a year ago

Power Therapy at Johns Hopkins All Children’s has been no joke — it’s been 8 weeks of pushing limits, building strength, and hard things. 💪✨ With only 3 sessions left, we’re feeling all the feels — proud, emotional, and so incredibly grateful.

This journey has come with its fair share of tears, but even more smiles and victories. Naomi has worked so hard every single day, and her determination inspires us all. Watching her grow stronger and more confident has been nothing short of amazing. 💛💙

Here’s to finishing strong — just 3 more to go! #PowerTherapy #JohnsHopkinsAllChildrens #CTNNB1 #NaomiStrong #DoingHardThings #TherapyWithHeart #AlmostThere #knowledgefornaomi taken in Johns Hopkins All Children's Hospital by @knowledgefornaomi

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a year ago

Still soaking in the magic and memories ✨ A huge THANK YOU to the @tampabaysunfc and the @tampabaysunfoundation for including Naomi and our whole family in these unforgettable experiences. 💛⚽️

Naomi has truly been inspired by the strength, heart, and determination of the women on this team. She calls them “my girls” and means it with all her heart. Watching her light up while cheering them on is something we’ll never forget — and hearing her talk about them while she works so hard toward her own goal of walking is just…everything. 🧡

This organization goes beyond sports. They show what true inclusion looks like — not just for Naomi, but for so many others. We’ve found more than just a team to cheer for — we’ve found a family. 🫶

Let’s go, Sun! 🌞 We’ll be cheering loud and proud in the FINALS!
#NaomisGirls #SunFamily #TampaBaySun #InclusionMatters #GratefulBeyondWords #WomensSoccer #CourageStrengthSunshine taken in Tampa, Florida by @knowledgefornaomi

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a year ago

Still floating from the joy of such an unforgettable day! 🌟⚽ Naomi had the absolute best time at the Tampa Bay Suns soccer game — from meeting the team to doing the COIN TOSS (!!) — it was pure magic. ✨

We are endlessly grateful to the @tampabaysunfc and @allchildrensfund for giving her this once-in-a-lifetime experience. 💛 The kindness, love, and care shown to Naomi will forever have a place in our hearts.

Thank you to everyone who helped make this day so special. @raganmcgillis It’s a memory we’ll treasure always in the Johnston house. LETS GO SUNS! 💙⭐️ #GratefulHeart #CTNNB1Strong #TampaBaySuns #JohnsHopkinsAllChildrens #ForeverThankful #GameDayMagic by @knowledgefornaomi

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a year ago

Making waves and catching foam—Naomi’s water day was splash-tacular! by @knowledgefornaomi

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a year ago

Please help support Naomi with the purchase of her newest tshirts. All proceeds will be used for her mobility chair/stroller. After countless letters and referrals from our care team, insurance has denied Naomi coverage of this chair which will allow her to sit comfortably when she is not able to use her walker. This chair will also help Naomi at school and home. Thank you to everyone who continues to support our family on this journey. Together I believe we can create “UNLIMITED” possibilities for Naomi! Xoxo taken in Florida by @knowledgefornaomi

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2 years ago

A moment we will cherish! #ctnnb1
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Naomi’s 1st play date with a classmate! This sweet little girl from her class was so sad the year was coming to end because she had grown very fond of Naomi. Her mom reached out and asked if Naomi would be interested in going to our neighborhood end of year celebration with her daughter. As a mom to a child with different abilities it was one of those core memories that you aren’t sure your child would share with a friend! Feeling so thankful and blessed to have seen the incredible bond Naomi has made with her classmate and I look forward to more! by @knowledgefornaomi

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2 years ago