Lena DeSantis wrote -
In December 2012, Maren was diagnosed with Rett Syndrome, a neuro-developmental disorder caused by random mutations in the MECP2 gene. After a period of seemingly normal development, our bundle of beautiful energy and joy lost the ability to talk, walk and use her hands, and now faces a future of possible seizures and scoliosis. Simply, Rett is horrible.
But along with this terrible diagnosis comes amazing hope. Researchers have completely reversed Rett in mice and recent studies suggest that the same is possible for humans.
We are entering a new phase of Rett research in which clinical trials have begun. It’s a phase where there is likely to be a direct impact on Maren’s life. But we need support to make this happen. We truly believe that Rett can be treated and eventually cured. The science is almost there but like so many things, the money is not.
We are co-chairing a benefit in New York City on November 3, 2014. The event raises crucial funds for the Rett Syndrome Research Trust (RSRT). While we know everyone cannot attend, we hope you take the time to watch the video and learn more about Maren, Rett and our hope. Any donation of any amount is appreciated, whether it be in dollars, love or prayers. All money raised goes directly to RSRT.
Please help Maren and all the other girls and women suffering from Rett. Please help give them the chance to soar.