A Cure for Our Granddaughter, Zoey

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As many of you know, our granddaughter, Zoey, has a rare and debilitating condition known as Rett Syndrome. The Rett Syndrome Research Trust (RSRT) has announced Roadmap to a Cure, a well-developed 3-year strategic research plan. To fund the plan, they need to raise $33 million dollars over the next 3 years, a significant increase over prior years. In addition, a biotech company, AveXis, has committed to advance gene therapy for Rett Syndrome into clinical trials. Progress is accelerating to cure this terrible disorder, and we would appreciate it if you would consider a donation. We will match your donations up to our $10,000 goal by the end of 2017. Your support will help change the future for Zoey and others with Rett. The funding for this research is driven almost solely by families affected by this disorder.

Zoey recently turned 3 and now is in pre-school as part of her early intervention program and works hard in up to 3 therapy sessions a day.  She is starting to communicate with her eye gaze computer, and her legs are stronger, but she is not yet able to walk unassisted. Despite her struggles, Zoey is usually very happy and proud when she succeeds in an effort. We know that she is a smart little girl, and understands much more than she can tell us. We try to engage her in typical kid activities. She likes to finger paint, and makes presents for Mommy and Daddy.  She exhibits understanding and pride in these gifts. She can’t blow bubbles, but she can squeeze the trigger on a soap bubble gun, and will laugh when the bubbles come out. Zoey enjoys playing in the pool, swinging, and being outside, especially if it’s windy. She absolutely loves music, and will move her arms to “dance.”

Rett Syndrome affects primarily girls and women and its symptoms are devastating. It has been compared to having autism, Parkinson’s, cerebral palsy, and epilepsy all at the same time. Like other girls with Rett, Zoey appeared to develop normally for the first 9 months of her life, before going through a regression. Since her diagnosis at 21 months of age, Zoey’s functional use of her hands has declined. She is now on pureed foods, despite previously being able to feed herself finger foods. Her crawling has significantly decreased, and she has difficulty getting herself into and out of different positions. She is nonverbal, as are most with Rett Syndrome. We do not want to see Rett rob Zoey of more than it already has. Time is off the essence. Please consider a donation. No amount is too small. Thank you for your time and consideration.

Dennis & Bonnie Adair

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 (8)

  1. Martha Petery 
    1 week ago
    $100
  2. Tim Freeman 
    1 week ago
    $50
  3. Mark Novis 
    2 weeks ago
    $100
  4. Frank Day 
    2 weeks ago
    $200
  5. Brenda Hoerner 
    2 weeks ago
    $100
  6. Ron Krum 
    2 weeks ago
    $100
  7. Bryan Werner 
    2 weeks ago
    $100
  8. Kathy & Chuck Mackey 
    2 weeks ago
    $100

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