A Wish for Emmaline

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Earlier this year, we decided to take a "Make A Wish" trip with Emmaline. When our wish coordinators came to our home they asked Emmaline what her "wish" was. Emmaline however, was unable to respond - Rett Syndrome stole her speech long ago. We had to pick a "wish" for her.  So, off we went to Disneyworld.  We had a wonderful time. But, throughout the whole trip, I knew it wasn't really Emmaline's "wish".

Rett Syndrome has stolen so much from our little girl. Her speech; her ability to use her hands - she can't use a spoon or fork, hold a crayon to color with. She has difficulty controlling her body - stairs in particular, terrify her. Eating has gotten harder - both chewing and swallowing. Last year, her weight plummeted to 37 lbs.  We have worked tirelessly to get it back up. Walking has also gotten harder. It's clear to us, her parents, that Emmaline is rarely comfortable. Her digestive system doesn't work as well as it should. She has difficulty breathing, constantly holding her breath, then gasping for air when she can breath again.

All the while, it's clear that Emmaline is very aware of what is going on around her and of what is happening to her. Sometimes, when it's been a particularly difficult day, she will scream and cry. One particularly bad day, she wept and wept. As I caressed her head, I said to her, "the doctors are working on a cure to make you better." Emmaline immediately stopped crying, her eyes fixed on mine. I have repeated those words multiple times to her. And every time, the same response. Her eyes glued to mine, unmoving.

And so you see, I know what Emmaline's real wish is. It's to have a cure. We need her to be cured - and we know a cure is possible with sufficient funding for the research!  So, we ask you to support us in raising money for the Rett Syndrome Research Trust’s, "Roadmap to a Cure". And someday, we will go back to Disneyworld - not as people with a wish - but as people whose wish has come true.

Any amount is welcome: $5, $10, $25...Many hands make light work! If you're able, a donation of $250 gives you a ticket to the Reverse Rett NYC gala on November 13. Donations of $1,000 or more can be applied as sponsorships to the event. But please know that any donation of any amount is welcomed with great gratitude. Please see the event link to see more about sponsorships!



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 (60)

  1. Girl Scout Troop #5202 
    4 weeks ago
    $650
  2. Loretta & Peter Taras  
    4 months ago
    $100
  3. Fatbardh Beshku 
    7 months ago
    $25
  4. Richard & Brenda Polizzotto 
    8 months ago
    $150
  5. Anonymous 
    8 months ago
    $25
  6. Armand Glick 
    8 months ago
    $150
  7. Alana Rasmussen 
    8 months ago
    $100
  8. Anonymous  
    8 months ago
    $200
  9. Emelia D 
    8 months ago
    $55
  10. Anonymous 
    8 months ago
    $25
  11. Eulalee Cambridge 
    8 months ago
    $25
  12. Anonymous 
    9 months ago
    $50
  13. Elaina Olynciw 
    9 months ago
    $150
  14. Mary Ortiz 
    9 months ago
    $200
  15. Christina Colon 
    9 months ago
    $100
  16. Anonymous 
    9 months ago
    $250
  17. Anonymous 
    9 months ago
    $6,000
  18. Anonymous 
    9 months ago
    $50
  19. Anonymous 
    9 months ago
    $25
  20. Natalie Bradfield 
    9 months ago
    $100
  21. Abby De Los Reyes 
    10 months ago
    $50
  22. Suzanne Glick 
    10 months ago
    $50
  23. Elliott Glick 
    10 months ago
    $750
  24. Anonymous 
    10 months ago
    $10
  25. John Gough 
    10 months ago
    $100
  26. Anonymous 
    10 months ago
    $100
  27. Anonymous 
    10 months ago
    $500
  28. Carlos Glick 
    10 months ago
    $250
  29. Karen Glick 
    10 months ago
    $1,000
  30. Anna Kremnev 
    11 months ago
    $100
  31. Karen & Seth Glick 
    11 months ago
    $30
  32. Teo Adiputra 
    11 months ago
    $100
  33. Ellen Wynn 
    11 months ago
    $25
  34. Susanne Cornado 
    11 months ago
    $20
  35. Scott Christensen 
    11 months ago
    $100
  36. Anonymous 
    11 months ago
    $50
  37. Anonymous 
    11 months ago
    $50
  38. Mouritsen Family Foundation 
    11 months ago
    $1,000
  39. Andi Bai 
    11 months ago
    $250
  40. Armand Glick 
    11 months ago
    $250
  41. Martin Oestreicher 
    11 months ago
    $100
  42. Wendy Taber 
    11 months ago
    $25
  43. Janice Lim 
    11 months ago
    $100
  44. Beverly Drottar 
    11 months ago
    $250
  45. Tanya Gough 
    11 months ago
    $50
  46. Shannon Parker 
    11 months ago
    $25
  47. Jenny Donahoo 
    11 months ago
    $50
  48. Sarah Polizzotto 
    11 months ago
    $2,500
  49. Angie Kremnev 
    11 months ago
    $25
  50. Gayla Smith  
    11 months ago
    $25
  51. Anonymous 
    12 months ago
    $50
  52. Shannon Karski 
    12 months ago
    $50
  53. Benjamin Glick 
    12 months ago
    $350
  54. Benjamin Glick 
    12 months ago
    $350
  55. Anonymous 
    12 months ago
    $25
  56. angie bowers 
    12 months ago
    $50
  57. Kristin Polizzotto 
    12 months ago
    $250
  58. David Glick 
    12 months ago
    $250
  59. Emily Arnall 
    11 months ago
    $25
  60. Cheryl Moore 
    11 months ago
    $25

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