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Lexi's story might be one reason you would be willing to donate.
Lexi is a 3 year old (almost 4) sweet little girl. When she was born I thought she was the most beautiful baby I had ever seen. I couldn't take my eyes off of her. My hopes and dreams for her future were endless. We decorated her room, bought adorable clothes, and gave her a cute nickname.
As the months went on, we continued to dote on her. She was meeting her milestones in the first year, but we started to notice that her progress and development was slowing down. I was worried that she wasn't walking by her first birthday. I continued to worry that she wasn't walking or talking by 15 months. I watched her loose interest in toys that once gave her so much happiness. Finally, at 17 months we decided to take Lexi to a developmental pediatrician to be evaluated.
At 17 months old, Lexi was pronounced developmentally delayed and her ongoing therapies began. We worked tiredlessly on Lexi's physical development and she finally walked at 22 months. We thought this was the beginning of Lexi's recovery and that she was on the path to catch up with her typically developing peers. Little did we know that our efforts, struggles, and battles were just beginning.
We continued to seek answers as to why Lexi was delayed. In the meantime, Lexi began having seizures when she was 26 months old. The seizures caused frequent falls resulting in bruises and screaming fits. After months of fighting with the insurance company, Lexi was finally approved for testing and medication. Now, Lexi's seizures are controlled, but a constant worry.
Right after Lexi turned 3, we got a call from the geneticist that was working with us. "Alexa has Rett syndrome," are the words that are repeated in my head from that phone conversation. I knew what that meant. There was no cure and Lexi would be faced with a lifetime of challenges. My hopes and dreams for my little girl to have a "normal" life decreased with each moment.
Since that day, almost a year ago, Lexi has developed breathing abnormalities, scoliosis, and sleep disturbances. She struggles with eating, walking, sleeping, and many other everyday things that we take for granted. Her diagnosis and weaker immune system requires constant trips to the doctor. However, Lexi continues to fight. On most days she is happy and enjoys things like going to the park, attending school, watching T.V., and listening to music.
I am proud to be Lexi's mommy! I admire her courage and strength. My hope for Lexi is that she can live a healthy life without pain and suffering. I hope for her to have hopes and dreams of her own.
Your help is Lexi's hope! Please donate!
For more information about Rett syndrome please visit www.rettsyndrome.org. Find out how researchers have reversed Rett syndrome in mice models and clinical trials are now underway.
A cure is close!