I am supporting Girl Power 2 Cure in their efforts to raise funds for research for Rett Syndrome.

As many of you know, my Lily has Rett Syndrome which is a debilitating neurological disorder that predominantly affects females but can affect boys. It is the leading genetic cause of severe impairment in girls, brought on by a single gene mutation that leads to underproduction of an important brain protein.

Kids are born “normal,” but without the protein, begin to lose acquired skills between 1 and 3 years old. Many lose their ability speak, walk or use their hands.  Lily simply never aquired those skills.  These kiddos, including Lily depend on their families for every part of their day. Complications include seizures, sudden death in their sleep and scoliosis.  Lily had a major spinal surgery this past June due to a severe 81% curve in her spine which was causing impaired breathing and could have lead to organ failure if not treated.  Luckily her surgery went very well thanks to her surgeon and the team at Shriners Hospital however, unfortunately Lily became septic shortly after surgery and went into renal failure.  Our kiddos can be very fragile and easily susesptiable to illness.  Gratefully, Lily has finally recovered and she is doing very well.

Despite their physical disabilities, girls and boys with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.  Lily is a smart, sassy little kid who loves to laugh.  She has taught SO many people how to "speak her language" including me and she communicates daily with joy and just the right about of pre-teen sass.  

Amidst the mass confusion in their central nervous systems, our kids are smart, strong, and waiting bravely for us to unlock the door to their recovery. 

Today, there is no cure. But Rett Syndrome is CURABLE! Research has proven once protein levels are back to normal levels, symptoms subside.

Researchers at Harvard, Baylor, UVA, Weill Cornell, Emory, Salk Institute, University of Edinburgh and dozens of other top-notch institutions are delving into Rett Syndrome. 

Not only will their work help thousands of children and adults worldwide, but their findings have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer’s and many other disorders.

In essence, our kids may hold the key to a cure for millions of people suffering from dozens of disabilities.