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Autism became personal for me when my four-year old niece, Helena, was diagnosed with autism spectrum disorder (ASD) last year. Helena had also been diagnosed at four weeks old with retinoblastoma cancer in both eyes, and the bones at the top of her spine did not fuse correctly leaving her unable to hold her head up straight. She was treated with eight rounds of chemotherapy at Children's Hospital Los Angeles and Memorial Sloan Kettering Cancer Center in New York and has been cancer-free for the last two years, but treatment left her blind in the left eye.
In the last two years, while her doctors were determining the best surgery option for her neck condition, it became apparent that her socio-emotional development was not on track with children her age. The neck surgery needs to take place before the age of five while a child's bones are still malleable, and recovery involves wearing a device drilled into the head at all times for three months. The behavioral patterns that Helena was manifesting would make such a surgical procedure almost impossible. Once Helena received an autism diagnosis, my family turned to Autism Speaks as a resource to figure out how to best help Helena. With much intervention therapy, Helena is becoming a happy four-year old whose can express that she is angry, and these behavioral episodes are becoming shorter in duration. We are hoping that Helena will be on track to attend mainstream kindergarten and lead a full life!
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