A Cure for Everly

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  • FAQ
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  • Supporters

Our sweet Everly is turning 3 in August, and is a happy, energetic, loving little girl. She loves music almost as much as she loves her baby brother Jack. She has a beautiful smile that would put a smile on anyone's face.

However, this past year we noticed signs that Everly wasn't developing on track. This July, we got the news that Everly was diagnosed with Rett Syndrome. Rett is a rare neurological disorder which randomly affects 1 in 10,000 girls, and causes symptoms of seizures, loss of speech, scoliosis, and takes away the ability to walk. As you can imagine, getting this diagnosis and starting to see the symptoms in Everly has been extremely difficult. It is tough to describe the feeling of not being able to take away her difficulties.

Fortunately for us, that is not where the story ends. We have great hope that there will one day be a cure for Everly. There is exciting research that has the potential to cure Rett syndrome, and greatly improve the lives of Everly and 350,000 other girls and women. The Rett Syndrome Research Trust's strategic plan, Roadmap to a Cure, strives to raise 33 million dollars in 3 years to further the research towards a cure for Rett Syndrome.

This research is not possible without donations from families and friends of those affected by Rett. Any amount given will help deliver results for Everly. We cannot express the amount of gratitude we have for your gifts and prayers!

Ryan and Annie Boucher


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 (45)

  1. Judith & David Robinson 
    5 months ago
    $100
  2. Marilyn & Daniel Brooks 
    5 months ago
    $100
  3. Tanya Vail 
    7 months ago
    $25
  4. Lawrence Friesen 
    8 months ago
    $25
  5. Thomas Bauer 
    9 months ago
    $50
  6. Jesse Meisch 
    10 months ago
    $25
  7. Anonymous 
    11 months ago
    $1,000
  8. Anonymous  
    11 months ago
    $500
  9. Mary Ryan 
    11 months ago
    $50
  10. Sherri Baffa 
    12 months ago
    $50
  11. Lisa Story 
    12 months ago
    $25
  12. Margaret & Jack Boucher 
    12 months ago
    $100
  13. Sherri Oliver 
    12 months ago
    $300
  14. Jeannette Hess 
    1 year ago
    $50
  15. Anonymous 
    1 year ago
    $50
  16. Paula Biddle 
    1 year ago
    $250
  17. Dian Blatchford 
    1 year ago
    $250
  18. Patricia Christensen 
    1 year ago
    $100
  19. Richard Gramza 
    1 year ago
    $250
  20. Richard & Elaine Brooks 
    1 year ago
    $100
  21. David & Judith Robinson 
    1 year ago
    $50
  22. Brian and Kathy Van Zelfden 
    1 year ago
    $25
  23. Anonymous 
    1 year ago
    $50
  24. Anonymous 
    1 year ago
    $200
  25. Catherine Emberton-Goings  
    1 year ago
    $25
  26. Eric & Chelsea Haley 
    1 year ago
    $250
  27. Donna Wielgus 
    1 year ago
    $100
  28. Anonymous 
    1 year ago
    $250
  29. Mark and Janet Eldridge 
    1 year ago
    $50
  30. John Gramza 
    1 year ago
    $100
  31. Jon Boucher 
    1 year ago
    $100
  32. Rod & Tracy Stevenson  
    1 year ago
    $100
  33. Neal and Courtney Dieker 
    1 year ago
    $100
  34. Anonymous 
    1 year ago
    $2,500
  35. Anonymous 
    1 year ago
    $50
  36. Cheryl Pennell  
    1 year ago
    $100
  37. Richard Gramza 
    1 year ago
    $1,500
  38. Erin Heger 
    1 year ago
    $25
  39. Diane Fulton 
    1 year ago
    $25
  40. Jenna Pike 
    1 year ago
    $50
  41. Jessica Hughbanks 
    1 year ago
    $100
  42. Katie Todd 
    1 year ago
    $25
  43. Katie Todd 
    1 year ago
    $25
  44. Jane Deterding 
    1 year ago
    $250
  45. Ryan & Annie Boucher 
    1 year ago
    $2,000

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