January 19 – Swinging

swings

Here’s what I love about this picture. My almost 14 year-old is a kind, nurturing, thoughtful, person. As he hits those teen age years, we don’t always get to see that side of him.

We aren’t fighting with him over the hair. Life’s too short.

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Here’s why I can hardly breathe when I look at this picture.

My nephew, who is 6 and in first grade, has Stargardt’s Disease.

Stargardt’s is a juvenile onset macular degeneration. His vision has already deteriorated and he is learning Braille for when his vision gets worse. There is no cure, well… stem cell research may provide something someday. It is genetic, and my twin nieces have the markers for the disease also, although their vision is o.k. now. They all wear hats and glasses because they tend to be very light sensitive.  (And they never complain!) Every year, they drive to UCLA to see a specialist. Their mom is a special education teacher, who is getting her vision/mobility MA. Dad stays home with the kids.

My boys do not have the markers for the disease.

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Posted in 365photos 8 years, 10 months ago at 7:58 pm.

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