yoocan - Chrissy Johnston - Shout YOUR worth
חיי היומיום וניידות

Shout YOUR worth

חסר תרגום בשפה עברית. מוצגת שפה אנגלית
מחלה נדירה & תסמונת

Chrissy Johnston

Shout your worth.

My name is Naomi and I was born with a rare genetic condition called CTNNB1. There are only approximately 200 cases diagnosed in the world as of today! I am three years old and the second oldest of 4 girls! My sisters are truly my biggest cheerleaders and motivators. At 3 years old I am not YET strong enough to walk independently on my own. It wasn’t until March of 2019 that I was first able to crawl. I am currently doing my second 3-week intensive therapy program at the Napa center. During this time I do 4 hours of intense therapy 5 days a week! Phew, I am exhausted after it. But I will say, it’s worth every minute of it. They are currently working on using my Nimbo posterior walker to guide me to independent walking, intense PT, OT, DMI, and speech therapy. When I was first diagnosed at the age of 18 months, the geneticist told my parents that they didn’t know if I would ever walk or talk! Today I am on my way to waking, up and chatting up a storm! I am strong, confident, and proud to shout my worth! I KNOW I WILL WALK and I know I CAN do anything I put my heart, mind, and hard work into! My day-to-day tends to be tough because I am limited in my mobility. I am hopeful with the continued determination and use of my Nimbo walker that I can have more independence soon! One of my favorite activities includes going to the beach. Crawling on the sand feels so much better on my knees and floating in the water gives my body freedom I don’t typically have! I stand proud (in my walker!) today to be a part of Rare and cerebral palsy communities!

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