Hope for Lily

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On November 2, 2016, our daughter Lily was diagnosed with a severe neurological disorder called Rett Syndrome. When Lily was born, she was a neuro-typical, beautiful baby-girl. She was early meeting her milestones, was an early sitter, and, before she turned one, she had at least 15 clearly articulated words. But around that time we also started to notice that she was falling behind on her gross motor development. Our pediatrician said not to worry, since all her other development was on schedule or early, but after a couple of months she started losing words, and her fine motor skills deteriorated. Around 18 months, she lost her two final words (“daddy” and “mama”) and by then we were sent to a pediatric neurologist for testing.

As devastating as the diagnosis was, it makes a huge difference to know that Lily understands what is happening. She knows what she wants to do, but just can’t execute. In the words of one of her neurologists, these girls have both a fully functioning brain and body; the two just don’t connect – a bit like in the aftermath of a stroke. Lily now spends much of her week in different therapies, trying to fight off the disease as it drains her skills. But she is such a champion – she works so hard and is still the most wonderful and happy child! During the last year she has made amazing strides—she is now doing some walking and has regained a few of her words. We are also working on using an eye-gaze computer to help her communicate better.

But even with this progress, it is still heart-breaking to see how much she struggles. She has largely lost the use of her hands; she can’t even lift a bottle or get food to her own mouth. She has to wear arm-braces to control compulsive arm movements toward her face. And as she is getting older and more aware, she is starting to get frustrated and sad, as she tries to play with children her age, but can’t get her body to cooperate, or when she tries to say something and it just won’t come out. What we cling to is that there is now so much hope for a cure. This disorder has been reversed in mice, and the Rett Syndrome Research Trust (RSRT) has had a huge part in raising money to fund research to take this further. It is thanks to wonderful, supporting family and friends like you that we have come this far, and that there is now a real possibility that Lily and all the other girls like her may be allowed to grow up to do all the things you hope for your daughter to do (go to college, travel the world, dance at her wedding…or even just live independently).

Rett doesn’t define Lily. She is just as smart, happy, and absolutely awesome as ever. But it is a huge obstacle for anything she wants to do or express. So please help us raise money to give Lily and the thousands of girls like her the chance to live life at their full potential! Any amount is welcome, and if you are in the Pittsburgh or Los Angeles area, there are two wonderful events you can attend to support in person:

For Love of Lily at the Pittsburgh Field Club on September 20.  This event is organized by Ann Fromm, Lily’s grandma.

Reverse Rett LA at the Fairmont Miramar in Santa Monica on October 13.  This is organized by several families in the LA area that have daughters with Rett Syndrome.


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 (43)

  1. Kim Lawson 
    9 months ago
    $50
  2. Calill Jagusch 
    9 months ago
    $500
  3. Alexander Grelli 
    10 months ago
    $100
  4. Melissa Cotton 
    10 months ago
    $50
  5. Gohar Behdadnia 
    11 months ago
    $100
  6. Anonymous 
    11 months ago
    $50
  7. MaryAnn Cain 
    11 months ago
    $100
  8. Anonymous 
    11 months ago
    $15
  9. William Jones 
    11 months ago
    $100
  10. Ariel Brice 
    11 months ago
    $100
  11. Niklas Delling 
    11 months ago
    $50
  12. Joanie Ellen 
    11 months ago
    $100
  13. Sean Gray 
    11 months ago
    $50
  14. Anthony Pastore 
    12 months ago
    $250
  15. James Killeen 
    12 months ago
    $50
  16. Ronen Gal-Or 
    12 months ago
    $100
  17. Michael Cindrich 
    12 months ago
    $100
  18. jacquelyn boyle 
    12 months ago
    $50
  19. Anne Grignon 
    1 year ago
    $50
  20. Rob Mallinger 
    1 year ago
    $100
  21. Anonymous 
    1 year ago
    $25
  22. Jeannine Shinoda 
    1 year ago
    $20
  23. Erica Yen 
    1 year ago
    $50
  24. Josh Forbes 
    1 year ago
    $250
  25. Frank Miles 
    1 year ago
    $50
  26. Marjorie Kaye 
    1 year ago
    $50
  27. Jacqueline Meyer 
    1 year ago
    $50
  28. zoubir ouarti 
    1 year ago
    $200
  29. Barmak Behdadnia 
    1 year ago
    $200
  30. Cristyn Chadwick 
    1 year ago
    $100
  31. Michael Osborne 
    1 year ago
    $100
  32. Melissa Meth 
    1 year ago
    $50
  33. Veronica Fromm 
    1 year ago
    $100
  34. Birgitta Abrahamsson 
    1 year ago
    $40
  35. Anonymous 
    1 year ago
    $10
  36. Lotta Delling 
    1 year ago
    $100
  37. Kathleen Laboon 
    1 year ago
    $500
  38. Cari Hulings 
    1 year ago
    $100
  39. Mattias Delling 
    1 year ago
    $500
  40. Brent Jones 
    1 year ago
    $1,000
  41. Melissa Taylor 
    1 year ago
    $250
  42. Anonymous 
    1 year ago
    $100
  43. Jennifer Griggs 
    1 year ago
    $100

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