Why We Need You
We need you to assist us in raising awareness and funds to find a cure for Rett Syndrome.
Rett Syndrome is a genetic neurological disorder that randomly strikes 1 in 10,000 girls within the first two years of life. Though Rett Syndrome may affect males, few are known to survive pregnancy. There is no cure. Our best hope is through research to understand and develop an effective therapy to find the cure.
Therapies to improve the quality of life remain elusive. The continued outcome of this disorder is a life time of full time care even for the most basic needs. Specialized equipment, surgeries and full time care from a parent or sibling becomes a standard part of life for these children. These children face a lifetime of dependency, employment and care issues.
Imagine the following for those with Rett Syndrome:
- The girls will never have the chance to become the President of the United States, the doctor who discovers the cure for cancer, the person who becomes the peacemaker, or the other incredible possibilities
- Many of the girls will never have the chance to run on a beach with their sister or brother holding hands
- You, your husband or wife and two daughters have an idyllic marriage and family. Your whole life surrounds their well-being and happiness. Then one day, the baby girl starts developing problems — just like that. You are powerless to do anything other than love them completely, speak with all of the doctors, learn all you can about Rett Syndrome, and begin physical, augmentative, and occupational therapy. Even then, the therapy may offer little because they may regress to the point where they lose the ability to move their legs, coordinate their hands well enough to eat or even tell you that they love you. You will call and speak with anybody who offers a faint hope or promise of a cure. You will realize there is no cure and slowly learn to accept it, but not without a fight.
There is hope and research. They deserve all of the opportunities and experiences that we have in our lives.
This is why we need you.