Thank you for visiting our fundraising page to help fight Rett Syndrome!
Our Natalie is our whole world, to put it mildly. At the start of this campaign, she is not quite 2 and has been diagnosed with Rett Syndrome for less than 2 months – though she has been fighting it for much longer. Now, we want to do our part to fight alongside her. As she works tirelessly to regain skills she has lost or new skills that she continues to amaze us with, we will work toward the day that a cure is found. A day when she can wake up and not have to fight.
Because, for our sweet girl, every day is a battle. She is our warrior. She is the strongest person we know. Although she can’t walk on her own, she works every day to get stronger and to control her steps. We can’t wait for her to experience the freedom to choose where she wants to go – and just GO! We can see her frustration, and it breaks our hearts.
Although she can’t speak, we know she has so much to share. She constantly babbles, chatters and throws in the occasional yell. When she is able to repeat a word she’s just heard, the joy on her face is electrifying. She’s working to learn to use eyegaze communication, and we are so excited that she’ll be able to communicate with us. But the real dream is to hear our sweet girl tell us, in her own, unique voice, exactly what is on her mind.
Although Natalie’s hands don’t always do what she wants or needs, she pushes herself to use them purposefully. She loves pictures and art, and we look forward to the day that she will be able to hold a crayon or a paintbrush and create her own.
But Rett does not define Natalie. It is just a part of her amazing being.
She loves (LOVES) music – her favorite song, “Can’t Stop the Feeling,” can turn even the most dire moment into a dance party.
She loves her dogs, Alice and Rory, and will reach out to touch them – giggling as they stick their cold, wet noses in her face.
She loves the outdoors, whether it’s a walk in her wagon, a ride in her trailer (pulled behind mom’s bike), a canoe or boat ride, or a hike – she’s (literally) a happy camper.
She loves the beach, and just recently stood, independently, for the first time ever while enjoying the sand between her toes. Her biggest smiles to date were captured while visiting her family in North Carolina – watching the waves in the ocean, letting them wash over her feet and bury her toes in soft sand.
And speaking of family, Natalie sure loves hers. She lights up when she sees them, gives them the sweetest hugs that tell us, when she can’t, how much she loves them. We are so lucky to have the family we have. They have shown such amazing support as we come to terms with Natalie’s diagnosis. We would be lost without them.
And last – Natalie loves Flamingos! Her trusty sidekick, Mingo, is almost always within arm’s reach – day or night – whether she’s at therapy, school, a doctor’s appointment, or just lounging in the hammock – Mingo is always there.
Natalie is never giving up, and neither are we. We hope that you will consider joining us in our fight to Reverse Rett.
Molly & Adam Fleming
