Rett Syndrome is a severe neurodevelopmental disorder primarily affecting females, with an estimated prevalence of one in 10,000 females.
There are no approved treatments available. Rett Syndrome is characterised by loss of acquired fine and gross motor skills and the development of neurological, cognitive and autonomic dysfunction, which leads to loss of ability to conduct daily life activities, walk or communicate.
Rett Syndrome also is associated with a reduced life expectancy. Approximately 25 percent of the deaths in patients with Rett Syndrome are possibly related to multiple cardio-respiratory dysrhythmias that result from brain stem immaturity and autonomic failure.
More than 95 percent of these patients have a random mutation in the MECP2 gene. Episodes of apnea, hyperventilation and disordered breathing are found in approximately 70 percent of patients with Rett Syndrome at some stage of their life.
We are a dedicated team here at "Jojo Looking For A Cure, Inc." in raising money for Rett Awareness and Finding a Cure. We raise funds by party bus rental services and fund raisers in Effingham and surrounding areas. It is our mission to create as much attention to this cause as we can so we can do our part in finding a cure for Rett Syndrome. This cause is near and dear to our family because we are affected by this gene disorder through family on an every day basis. We will not stop until a cure is found.
I AM A GIRL
If you can look past these legs that don't work, you will see that I am a girl
If you can look past these hands that don't work, you will see that I am a girl
I you can look past the screaming from frustration and pain, you will see that I am a girl
I you can look past the voice that isn't there, you will see that I am a girl
Rett Syndrome, you may take my body but you will never take my mind and my spirit
For these legs long to walk with you
For these hands long to reach out to you
For this body longs to feel comfort and peace
And this voice longs to tell you "I love you"
I am a girl
by Lisa Anne Weaver for Ashley Bernadette Simard and all of our Rett Angels