Anchor Center For The Blind Allows 3-Year-Old To Live More Fully With Disorder
To see Arabella running about her living room in her home, you might not know that she has Hermansky-Pudliak Syndrome (HPS), which is a rare disorder that affects1 in 500,000 to 1,000,000 worldwide. It is a condition that not only affects the light coloring of the skin and hair, it also limits the vision of the one who has this disorder.
But you will not convince Arabella that she is limited in anyway. You and I walk through a room busy with different furniture shapes, concerned that we might bump into one. As I watched this active little girl scurry through her living room, I said to her dad, Nate, that she appears oblivious to the large pieces of furniture. “Arabella doesn’t know that she is blind.” Angela told me later that Arabella has actually memorized where each piece of furniture is. (I know that but I still hit the leg on the sofa.) So, she scampers about as any sighted child. Her two siblings, Luke (6) and Gianna (1), appear to enjoy their sister, as though nothing was wrong. When Luke is leading the playtime, he doesn’t act as if he is making concessions, but rather is just playing with his sister. Had I not been told of her vision issues, I would not have known.
Since Arabella began going to the Anchor Center for Blind Children some three years ago, the collaborative efforts of the staff have enabled Arabella’s mother, Angela, and her dad to know how best to help their daughter. And Angela does just that. I watched as Angela placed Arabella’s coloring book on a blue pad. Noting that the blue pad gave Arabella a soft coloring surface, Angela was quick to point out that the blue surface contrasted with the white coloring book. Another example of the contrast effect was when she gave Arabella some strawberries on a white pad. The whole idea of contrast was the guiding method for Arabella and her mother. When I was talking with Angela, she gave me the distinct impression that Anchor works more like a member of the family instead of a clinic.
HPS does limit the vision of any child, but through the dedicated professionals at Anchor, little Arabella not only thrives, but delights anyone fortunate to be in her space.