Naomi – Brain Tumor, Nystagmus, amblyopia and Poor Vision

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Naomi was born on May 11, 2009 via emergency C-Section after “crashing” with a dangerously slow heart beat following about 15 hours of an induced labor.

She was diagnosed with Down syndrome at 9 days, and with a brain tumor at 7 weeks. The tumor was surgically removed, and she remains cancer free without radiation or chemotherapy. Naomi was diagnosed with nystagmus, amblyopia of the left eye and poor vision in the left eye early on. She has been wearing glasses and a patch over her right eye for several years.

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This past October, Naomi’s neurosurgeon explained that the tumor, which had occupied a large portion of the right side of her brain, may have caused a visual field loss on the left side. This means that Naomi can see only out of the right half of each eye. This leaves an unusual blind stripe down the center if she is using both eyes. When the right eye is patched, her vision is extremely poor in the remaining half of the left eye that actually sees, but is currently still correctable with glasses.

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After obtaining a second opinion in order to obtain vision services at school, we were told by the ophthalmologist that we should seek services and resources for children who are blind because Naomi had only 25% effective vision. A school assessment was done and vision services have been added to Naomi’s IEP. While Naomi will attend school during the summer, no services will be provided, so it will be fall before we can see if any improvements can be made.

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Naomi has had 2 different frames, both from the line called Erin’s World, which is made specifically for children with Down syndrome.  I think they look fabulous on her!

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