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Hiatus...Miles almost 3!!

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Hello all, it has been a while since I last posted, life, grad school

and all have me VERY busy. To refresh, Miles, almost 3 was diagnosed

with BPES only AFTER, my optha. casually mentioned he " looked " like he

had it about 1 1/2 years ago and I did the research. We later had

genetic counseling and he has it. However, he is sooooo bright and has

a mild form. I've posted new pics of him. We are an African American

family which also had made finding support difficult (NO ONE has heard

of this! As always, I am grateful for this resource.

Crystal

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