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My daughter Emma Marie is my hero. I can't imagine living as she does and going through all that she has in her short life, and still being able to smile. Her smile lights up my world and that of everyone who is lucky enough to experience it.
Emma can not speak with her mouth, but speaks volumes with her eyes and her smiles. She can not use her hands to do the things we all take for granted, like getting a drink or a bite to eat. When she was two years old, she could feed herself, draw a picture, play with toys, and turn the pages of a book. She knew every letter of the alphabet, uppercase and lowercase, could say it and name a word that started with the letter. Even though she was very smart, it was at this time that we started to notice her lag behind kids her age in language skills.
We noticed that although she could talk, she really only echoed us or labeled things. She was diagnosed with Autism a short time later. We immediately started intensive therapies and biomedical interventions. At three and half years old she was having a combined 40 hours a week of school based therapy, in home ABA therapy, occupational therapy, speech therapy, and music therapy yet she was still losing skills like feeding herself and the speech that she had acquired. Unbeknownst to us, we were also beginning to see our first signs of Rett Syndrome; a strange flapping of the hands and breath holding.
In February 2003, at one o'clock in the morning, I was reading Autism literature when I came across Rett Syndrome. I immediately knew that this is what was taking my daughter. I went to my computer and started reading. I woke my husband, Scott, and together we read everything we could find. We even measured her head in the middle of the night to see if she had another symptom, a slowing of growth of her head circumference.
On August 14, 2003, what we already knew was confirmed. We were told there was no hope and that Rett Syndrome was the worst diagnosis that they could give a parent. Through Girl Power 2 Cure and RSRT, we have found hope and know that there is work being done to help Emma live the best, most happy life that she can. We will not give up until we find treatments and ultimately a cure! We truly believe it can happen in Emma's lifetime! My mother often recalls when the cure for Polio was found when she was a child. She reminds me that it can happen and points out that my doubts are because I have never seen such a wonderful event. I hold on to the hope my mother so lovingly provides.
For me, as Emma's mother, this has been very hard. I miss my baby who could talk and be independent. It is hard to know she is trying to tell me something that I am unable to figure out, especially when I know she in pain. It makes me so sad to see that my two daughters will not share the kind of bond and memories I have with my own sister. Emma has taught me so much about life and what is important, and has brought so many wonderful people into our lives. We could not do this without our Rett family and our wonderful friends at home, who have supported us, accepted Emma, and been my constant strength. Through all of you, we have found what feels like normalcy (if there is such a thing), even as a family with a child who has special needs.
Today Emma is a happy pre-teen who just entered eighth grade! She enjoys horseback riding, One Direction, riding her ATV with her Daddy, and tickles with her sister, Allie. She loves to eat her favorite foods of noodles and corn-on-the-cob, and is always ready for a good party. She communicates with yes/no cards and her very own MyTobii speech generating device that works with her eyes! It is amazing!
Thank you for taking the time to read about Emma. Please, if you can, consider supporting Rett Syndrome research by making a donation, planting a Garden of Hope at your business, or attending our next fundraising event! Every dollar helps us get closer to the cure!