Thank you for visiting my fundraising page! For more info on Rett syndrome please go to: www.rettsyndrome.org
For more on how this debilitating syndrome impacts our sweet Annie and our family, read on.
23 years ago, my husband, David, our then 3 year-old son, Erik, and I welcomed sweet Annie into our family. Our Annie was born with ten fingers and ten toes, an all-round healthy and happy baby. Over the next year while Erik was busy reading and running and David was busy traveling for work and running after Erik, Annie was busy doing what babies do. She smiled, rolled over, sat up, pointed to objects when asked, held and played with toys, crawled, began to talk, and was on the verge of walking. And I may be prejudiced but she was particularly precocious when it came to winning people's hearts. I didn't know it, but up until then our lives were perfect.
The next year was the worst of my life. During that year Annie stopped moving forward. She stopped pointing, couldn't walk independently, started "shaking", didn't seem able to hold on to toys, and worst of all she stopped acquiring new words. Over time Annie stopped using the 8 or so words she'd begun to use earlier than her peers. For a number of years she continued to say Ma-ma and Da-da, but even that was taken from her, from us. Never, in 23 years have we heard our daughter say, "I love you."
To say that the years that followed were a challenge is like saying that running a marathon is akin to a long walk. The hardest part was not knowing what was wrong. We dragged Annie to specialists in four different states, worked every therapy we could find, spent hours and hours in the library researching, ... We didn't get the diagnosis of Rett syndrome until Annie was 8 1/2 years old.
In some ways having a diagnosis helped, yet compared to today little was known about Rett syndrome in 1996. Since then the gene was discovered, a blood test developed, and so much more. And over the past two years researchers have taught my husband and I to hope again. We do not hope in vain! The science supports us. One day soon there will be treatments for our littlest angels. And one day there may be a cure! For example, the phase one of the first ever drug trial was successful and phase two has begun.
We have never been so close to treatments! We've never been so close to a possible cure. After over two decades of trying to tell myself that hope was a waste of energy, can you imagine how full my heart and eyes are as I write to you? I hope so, because we need your help.
Why help? Do you have a daughter, niece, sister, ...? How about donating in gratitude that they do not have Rett syndrome? How about donating before your granddaughter, great niece, or neighbor is diagnosed with Rett syndrome? Maybe you just want to feel like a hero today? I promise you will be to our family. I promise to be lavish and obnoxious with my thanks and mean every last hug and exclamation point!!! And you will be a hero to thousands of other girls and their families!
No donation is too small and there are other ways you and your family can help. For ideas email me at: evielynn6@gmail.com
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might help us too!
Peace be with you all!