Fight for Her Life

  • Description
  • FAQ
  • Comments
  • Supporters

Our daughter Ava is the most precious gift we’ve ever been given and the most beautiful person we know. She is brave, joyful, and loved by so many! Ava also has Rett Syndrome, which has taken away her ability to walk, talk, or use her hands purposefully. Because of Rett Syndrome, Ava is unable to perform the simplest daily activities like playing with toys, feeding herself, breathing normally, or sitting up without support. She has a feeding tube and epilepsy and has undergone more medical testing and procedures than most of us will experience in a lifetime. Rett Syndrome has not been cured yet, and without a cure Ava and girls like her will have dramatically reduced lifespans and require around-the-clock care for their entire lives.

Please join us in raising money to support the Rett Syndrome Research Trust in its sponsorship of clinical research to find a cure for Rett Syndrome. We believe that Ava is fearfully and wonderfully made, and that God has a very special purpose for her life. It is our prayer that Ava will be able to enjoy things like holding a doll, coloring a picture, and singing a song. We hope she will be able to hug us, talk to her little sister, and play on the playground with her friends. We hope that she will be able to not only read these words one day but to tell the world her miraculous story. Join us as we fight for her life.



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 (51)

  1. Food City Charitable Foundation 
    2 years ago
    $250
  2. Virginia Witcher 
    2 years ago
    $20
  3. Andrew Hall 
    2 years ago
    $50
  4. Ann Hall 
    2 years ago
    $400
  5. Ann Hall 
    2 years ago
    $100
  6. Steffan Nunn 
    2 years ago
    $300
  7. Bethany Lensgraf 
    2 years ago
    $100
  8. Tammie Fleming 
    2 years ago
    $50
  9. Joe Lynch 
    2 years ago
    $200
  10. Paula Dunehew 
    2 years ago
    $50
  11. Greg Raymond 
    2 years ago
    $50
  12. Margaret O\'Leary 
    2 years ago
    $100
  13. Linda Hurst 
    2 years ago
    $200
  14. Beth Kitch 
    2 years ago
    $500
  15. Robert Matthews 
    2 years ago
    $1,000
  16. Sean O\'Connor 
    2 years ago
    $200
  17. Megan Nunn 
    2 years ago
    $500
  18. Andrea Smith 
    2 years ago
    $50
  19. Ann Nunn 
    2 years ago
    $250
  20. Ellen Thompson 
    2 years ago
    $50
  21. Emily Johnson 
    2 years ago
    $50
  22. Margaret Whitaker 
    2 years ago
    $500
  23. Vanessa Marmino 
    2 years ago
    $20
  24. Tammy Henderson 
    2 years ago
    $100
  25. Julie Hill 
    2 years ago
    $25
  26. Kathryn Wingard 
    2 years ago
    $50
  27. Robert Whitaker 
    2 years ago
    $500
  28. Doug & Dena Clapp 
    2 years ago
    $50
  29. Julia Carter 
    2 years ago
    $20
  30. Anna Miller 
    2 years ago
    $30
  31. Sean Dunehew 
    2 years ago
    $300
  32. Gail Griffin 
    2 years ago
    $25
  33. Jeff Fowler 
    2 years ago
    $50
  34. Nancy Monnat 
    2 years ago
    $50
  35. Charles Neff 
    2 years ago
    $100
  36. Charla Nix 
    2 years ago
    $100
  37. Kathleen Kiniry 
    2 years ago
    $100
  38. Leila Luopa 
    2 years ago
    $50
  39. David Hall 
    2 years ago
    $500
  40. Ruth Dewhurst 
    2 years ago
    $25
  41. James Rogers 
    2 years ago
    $100
  42. Steven Miller 
    2 years ago
    $100
  43. Polly Hale 
    2 years ago
    $50
  44. Katie Miller 
    2 years ago
    $100
  45. Melissa Lusk 
    2 years ago
    $1,000
  46. Lindsey Mansell 
    2 years ago
    $100
  47. Beth Wingfield 
    2 years ago
    $250
  48. Jessie Strike 
    2 years ago
    $50
  49. Marnie Rogers 
    2 years ago
    $200
  50. Laurie Griffith 
    2 years ago
    $100
  51. Brian and Carri Jobe 
    2 years ago
    $200

This is a unique website which will require a more modern browser to work!

Please upgrade today!