I believe that you should never take things for granted, because they could be gone in the blink of an eye. My sister, Sophia Rose, 5, was just like any normal toddler: she was learning words, starting to walk, and was very healthy. At around one year of age, Sophia’s words started to ‘disappear’, and she was not progressing at the rate of a normal toddler. After numerous tests, Sophia was diagnosed with Rett Syndrome. Rett Syndrome is a neurodevelopmental disorder that stops the development of the brain during early childhood. It has been heartbreaking to see my little sister suffer from this horrendous disease, gradually losing all of her physical abilities, losing all of her speech, facing the inevitable. I have realized, while going through this horrible experience that I had taken countless things for granted, things that I never would have thought about if it were not for Sophia’s loses. Because of Rett Syndrome, Sophia has breathing irregularities, seizures, loss of hand use and mobility, growth and weight concerns, sleep disturbances, eating difficulties (she is mainly fed through a gastronomy tube), she has low muscle tone, fragile bones, she will develop scoliosis, and every moment of her life will be a struggle. I know that Sophia desires to walk, run, and play with all of the other children her age. When I look into Sophia’s eyes, I see sadness and frustration. It is so incredibly hard to look at Sophia and know that there is a person, trapped inside her own body, who wants to express her feelings and live a normal life. To know that Sophia will never be able to do those things is unimaginably hard to accept. I know that Sophia is (without a doubt) the most intelligent, brave, and strongest person that I will ever know. But what I do not know is how I would handle being in her situation: not being able to communicate where I hurt, not being able to tell anybody what I want or need, not being able to control my body- I just cannot imagine living that way. I know that everybody takes things for granted, if only they knew how lucky they are. So please, try to never take things for granted, because you do not know how long you will have them.
-There is no cure for Rett Syndrome. I aspire to one day become a scientist and find a cure for this disease that has taken so much away from my little sister. I am thankful for each day that I am able to spend with Sophia, my silent angel.
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