Aubrey celebrated her first birthday a few months ago with her family, and you could tell how happy she was. The summer came and went, but Aubrey still couldn't walk. She couldn't even fully crawl, she just creeped and wiggled her way around. She had to get surgery over the summer for her ears; she got tubes put in to try to reduce the amount of ear infections she gets. Something else we are noticing is that she is digressing. Everything she was once able to do, she can't do anymore. She does not hold on to her own cup, and still isn't eating real food. She has a hard time standing against things with support, and cannot fully sit up on her own. It makes me sad because normally at this age she would be running around and talking, but she can't do that yet.
My cousin Ashley, Aubrey's mom, decided to take her to the doctors to address her concerns. The doctors became worried too, because this type of development was not normal. The doctors never really saw an 18 month old lack this many skills, and especially never saw an 18 month old lose all the skills she had. They ran several tests on Aubrey to see if there was a problem. It took months to hear a result, I guess it takes awhile to get results from a blood test for a baby. My whole family was so scared not only for Aubrey, but also Ashley and her husband Tom. Knowing that something could be wrong with Aubrey tore them apart, and it tore my whole family apart too. It became hard to focus on daily things knowing that something could be wrong with her. We prayed because that was all we could do.
A few weeks ago, we got results back from the tests. As it turned out, Aubrey was diagnosed with a disease that they call Rett's Syndrome. Ashley and Tom were completely devastated, as was my whole family. The doctors told them that this is an extremely rare form of autism that is only found in girls. If it is found in boys, it's deadly. After doing research, we found out that there is almost no hope that she will ever walk, talk, or do anything that other children can do. Her life expectancy is also only until about the age of 30. She will need to be in a wheelchair in a few years too. We are learning more and more each day, all we know right now is that she has Rett's and will most likely never walk or talk. This makes me very sad because I looked forward to doing so much with her, but now I probably won't be able to. Hopefully doctors can do something for my family, because right now this is the worst thing that could have happened to us.
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| Aubrey at her first birthday party. |
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| Aubrey before her surgery. |
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| This constant movement of her hands to her mouth is a sign of Rett's Syndrome. |
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| Aubrey having fun at the park with her daddy! |
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| She loves her rocking chair! |
