My name is Nadine. I am 9 years old. I have a twin brother named Jameson. He talks for the both of us and he always makes me laugh by making funny faces and dancing around. He also knows exactly what I like and keeps me well-stocked with toys.
We listen to the Moana soundtrack over and over and he never complains. We play games together like UNO and Battleship. We enjoy watching Disney movies together and he takes turns with me to make sure I get to watch my favorite shows like “Gabby’s Dollhouse” and “If You Give A Mouse a Cookie”.
I am thankful that we are homeschooled together. We love listening to our mom read us books, oh so many books, especially anything with magic or a little mystery. I love reading books on my Tobii eye gaze device too!
I also love listening to my dad say silly things with his Irish accent! He makes me laugh so much that I can actually make my voice say “SILLY” when he is around! I love being half Irish and half American!
My mom tells me that I was born smiling. I was the first one to roll over at 5 months old, but at 6 months old, I seemed to “regress”. While my twin brother sped ahead hitting all of his milestones like crawling, walking, talking, etc. I struggled just to sit up and started having seizures at 18 months old. A week before our 2nd birthday, I was diagnosed with this thing called “Rett Syndrome”.
The following week, when we turned 2, my mom enrolled us in a Kindermusik class together making sure that my brother and I would always be together no matter what! We’ve enjoyed Kindermusik so much as a family that my mom is now a Kindermusik teacher and we teach a music class online every week for other families impacted by Rett Syndrome. We’ve made friends all over the world! Our weekly online Rett music class is my favorite part of the week. I love my friends and music time!
Boy, it’s been quite a journey! I am so thankful for my amazing family and friends that support me and love me. I am so hopeful that there is a cure for Rett Syndrome in our near future and I can’t wait to see how far I’ll go!
Nadine's Moana
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Nadine's Maui
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Nadine's Chief Tui
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Nadine's Gramma Talla
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Nadine's Pua
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Nadine's HeiHei
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