Natalie’s Never Giving Up!

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Thank you for visiting our fundraising page to help fight Rett Syndrome!

Our Natalie is our whole world, to put it mildly. We want to do our part to fight alongside Natalie as she battles this terrible syndrome. 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, how much she wants her independence, 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 is learning to use her eyegaze device for 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 songs, "Can't Stop the Feeling," “Faith” from Sing and the entire Moana soundtrack 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’s even taken a stab at skiing, and loved that, too!


She loves the beach, and 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


What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (268)

  1. Dorothy Pelanda 
    1 month ago
    $50
  2. Lynda Juneman 
    2 months ago
    $100
  3. mary curran 
    2 months ago
    $100
  4. mary curran 
    2 months ago
    $200
  5. Keith and Sue Nason 
    3 months ago
    $500
  6. Molly & Adam Fleming 
    3 months ago
    $1,075
  7. Hannah Charter 
    3 months ago
    $100
  8. CarMax Foundation  
    3 months ago
    $500
  9. Tyler Izzard  
    3 months ago
    $10
  10. Patty Johnson  
    3 months ago
    $100
  11. James Schellenger 
    3 months ago
    $1,000
  12. Gerry & Carolyn Urban 
    3 months ago
    $100
  13. Constance Lang 
    3 months ago
    $50
  14. Melissa Sullivan  
    4 months ago
    $100
  15. Anonymous 
    4 months ago
    $250
  16. Kathy Jordan 
    4 months ago
    $50
  17. mary curran 
    4 months ago
    $100
  18. Luke Fleming 
    4 months ago
    $250
  19. Christina Fleming 
    4 months ago
    $250
  20. Carolyn Pettit 
    4 months ago
    $50
  21. Megan Steahly 
    4 months ago
    $40
  22. Tony Brown 
    4 months ago
    $250
  23. Two Labs Charitable Fund 
    4 months ago
    $1,000
  24. Kathy Danec 
    4 months ago
    $100
  25. Molly & Adam Fleming 
    4 months ago
    $100
  26. Alex Keane 
    5 months ago
    $50
  27. Kimberly Stoltz 
    5 months ago
    $1,000
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    5 months ago
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    6 months ago
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  51. Sue & Keith Nason 
    6 months ago
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  52. Jaime & Andrew Mocca 
    6 months ago
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  53. Karen Fleming 
    6 months ago
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  54. Robert Mowery 
    6 months ago
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    7 months ago
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    7 months ago
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  58. Dana Underwood 
    7 months ago
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  59. Jess Izzard 
    7 months ago
    $130
  60. Let's Flamingle for a Cure! 
    7 months ago
    $7,247.35
  61. Jess Izzard 
    8 months ago
    $225
  62. Leticia Bombardier 
    8 months ago
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  98. Keith and Sue Nason 
    9 months ago
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  99. Elisabeth Schuster 
    10 months ago
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  100. Molly Fleming 
    10 months ago
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    10 months ago
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    10 months ago
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    10 months ago
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    1 year ago
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  117. Kimberly Stoltz 
    1 year ago
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  118. Karen Fleming 
    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
    $100
  248. Susan Truitt  
    1 year ago
    $250
  249. Anonymous 
    1 year ago
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  250. Kristin Tobin 
    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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  259. Molly and Adam Fleming 
    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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    1 year ago
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  267. Kimberly Stoltz 
    1 year ago
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  268. John Patterson  
    1 year ago
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