A Cure for Zoey

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UPDATE | 07.15.2016


We have been overwhelmed by the generosity of our friends and family who have supported our campaign to raise funds for the research to help find a cure for Zoey and all girls and women with Rett Syndrome.  We could never thank you enough.  Because we know we are making such a difference to the research, we are raising our goal.  If you haven’t supported yet, please do!

Thank you so much!




Our precious daughter, Zoey, who turns 2 on July 28th, has been diagnosed with a rare and debilitating condition known as Rett Syndrome. We are asking for help with raising funds, as research into treatments and a cure is driven almost solely by families affected by this disorder.

Since early infancy, Zoey has had a smile that can light up any room and an infectious belly laugh that you can't help but laugh along with. She has always had amazingly expressive eyes that often have a devious look that makes you wonder just what she is thinking. We have memories of her as a one year old laughing hysterically at waves crashing on the beach, and wanting to be the star of the show at every restaurant, trying to catch the eye of anyone who would look her way, so that she could flash her smile or one of those looks with her eyes.

Zoey appeared to develop quite normally for her first 6 months. When she was not crawling or saying any words at 13 months, we became more concerned. After several tests, we finally got the devastating news of Rett Syndrome on May 13, 2016. It was a heartbreaking day for our family.

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. But there is great hope. In 2007, Rett Syndrome was shown to be reversible in a lab setting, and scientists have since been exploring many avenues to make this a reality for Zoey and other girls.

Since her diagnosis, Zoey’s hand use has already regressed further. We are unsure whether this regression period has ended or if it will continue to manifest in other ways. She is still crawling and babbling, but has not yet walked independently or talked. She is able to hold a straw cup for brief periods and feed herself certain foods with her fingers, but these are not easy tasks for her, and she is beginning to have some swallowing issues. She is a very determined little girl, but we can sense her frustration. We know that she understands much more than she can tell us. Despite these issues, she is an incredibly happy girl. Her favorite things to do are swing, play in the water, “dance,” listen to music, play with any toys involving lights and sound, and be outside, especially if it’s windy!

We do not want to see Rett Syndrome rob Zoey of more than it already has. Time is of the essence. Please consider donating to help Zoey and the many other girls and women living with this devastating disorder. No amount is too small! We appreciate your time and consideration!



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.


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    3 weeks ago
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    2 months ago
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    4 months ago
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