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 (29)

  1. Teo Adiputra 
    5 days ago
    $100
  2. Ellen Wynn 
    6 days ago
    $25
  3. Susanne Cornado 
    6 days ago
    $20
  4. Scott Christensen 
    6 days ago
    $100
  5. Anonymous 
    7 days ago
    $50
  6. Anonymous 
    2 weeks ago
    $50
  7. Mouritsen Family Foundation 
    2 weeks ago
    $1,000
  8. Andi Bai 
    2 weeks ago
    $250
  9. Armand Glick 
    2 weeks ago
    $250
  10. Martin Oestreicher 
    2 weeks ago
    $100
  11. Wendy Taber 
    2 weeks ago
    $25
  12. Janice Lim 
    2 weeks ago
    $100
  13. Beverly Drottar 
    2 weeks ago
    $250
  14. Tanya Gough 
    2 weeks ago
    $50
  15. Shannon Parker 
    3 weeks ago
    $25
  16. Jenny Donahoo 
    3 weeks ago
    $50
  17. Sarah Polizzotto 
    3 weeks ago
    $2,500
  18. Angie Kremnev 
    3 weeks ago
    $25
  19. Gayla Smith  
    4 weeks ago
    $25
  20. Anonymous 
    4 weeks ago
    $50
  21. Shannon Karski 
    1 month ago
    $50
  22. Benjamin Glick 
    1 month ago
    $350
  23. Benjamin Glick 
    1 month ago
    $350
  24. Anonymous 
    1 month ago
    $25
  25. angie bowers 
    1 month ago
    $50
  26. Kristin Polizzotto 
    1 month ago
    $250
  27. David Glick 
    1 month ago
    $250
  28. Emily Arnall 
    3 weeks ago
    $25
  29. Cheryl Moore 
    3 weeks ago
    $25

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