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Sadie | Make Rett History

Meet Sadie

Like most other 6-year old girls, Sadie loves Taylor Swift, decorating cupcakes and all things Disney. Unlike her peers, Sadie can’t walk, she isn’t able to speak anymore and she can no longer control her body. She lost the ability to feed herself, to hold toys, and to turn pages in a book. While her intelligence shines through, thanks to an amazing communication device called the Tobii,  Sadie is trapped in a body that no longer cooperates.   

Rett Syndrome is a neurological disorder caused by a random gene mutation on the X chromosome. It affects 350,000 people, mainly females. Every 90 minutes a girl is born with Rett Syndrome. After breast cancer, no other female disease affects more people. Baby girls appear completely normal at birth, but devastating symptoms arise during toddler years. 

There is a silver lining, however. Rett Syndrome has been proven in labs to be curable and reversible. The Rett Syndrome Research Trust is funding elite scientists around the world who are developing cures using gene therapy, RNA editing, protein replacement, and other exciting approaches.

This means Sadie might speak again, control her body again and walk on her own. This means Sadie can attend the same school as her sister and play with kids on the playground. This means Sadie can have the childhood she dreams of and deserves.

We are doing everything possible to make this a reality while Sadie is young. Will you help us Make Rett History? 

With love,

Steph, Andy, Lucy & Sadie Bohn

 

How can you help?

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