Like many other 8-year old girls, Sadie loves Taylor Swift, Pixar movie night, and plushie toys. Unlike her peers, Sadie can’t walk, she isn’t able to speak any more and she can no longer control her body. She lost the ability to feed herself, to hold crayons, 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. Babies appear completely normal at birth, but devastating symptoms arise during toddler years. Every 90 minutes, a child is born with Rett Syndrome.
There is a silver lining, however. Rett Syndrome has been proven to be reversible. Five leading biotech companies have announced Rett programs because of the groundbreaking research funded by the Rett Syndrome Research Trust (RSRT). Scientists around the world are developing cures using gene therapy, RNA editing, protein replacement, and other exciting approaches. To date, RSRT has raised over $66 million from friends and family of people with Rett Syndrome.
A cure for Sadie means she might speak again, control her body and walk on her own. When that day comes, Sadie can attend the same school as her sister, play a sport and go to summer camp. We are doing everything possible to make this a reality so Sadie can have the childhood she deserves. Will you help us?
Together, we can Make Rett History.
Steph, Andy, Lucy & Sadie Bohn