Lily’s Fight Against Rett

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Meet our Silent Angel, Lily McKie. After a year of invasive testing, in February 2017 our Lily was diagnosed with Rett Syndrome, a rare neurological disorder that affects 350,000 girls around the world. This disorder is like having Parkinson’s, Cerebral Palsy, Epilepsy, and anxiety disorder all in one package. For Lily the signs of this life threatening syndrome began appearing at just one year of age. Lily began having nocturnal seizures, regressed in developmental skills and to this day has never been able to speak her first word. She has never crawled, walked, pulled to stand and has lost all mobility in her left hand and continues to have multifocal brain spikes at night. Though Rett has robbed her of so many things this little girl is a fighter and she works hard every single day in her therapies to try to learn how to crawl, walk, and communicate. Even through this she is a joyful, sweet, and funny child.

Though her first few years of life and our first few years of new parents have been challenging her future can be forever altered with a cure. Over the past decade great efforts towards developing a cure have been made with truly remarkable results. The Rett Syndrome Research Trust, a non-profit organization, has supported scientists who have reversed this disorder through pre-clinical trials with genetically engineered mice. They have proved that this is a disease that can be cured. The researchers are not far from finding a way to reverse this disorder in our little girls; but there is a lot of work to still be done!

Your donation will help fund essential research of effective treatments and to find a cure for Rett Syndrome. We have joined the fight against Rett….please join us in being the voice for those girls that cannot speak for themselves.


Juliann & Andrew Edwards


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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  1. Katherine Sternberg  
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    3 months ago
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    4 months ago
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    8 months ago
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