Cohen Syndrome

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A Ray of Sunshine

When Andy Bob was a year old he was tested at the university hospital in Portland, Oregon. The doctor told me he was microcephalic and would be globaly delayed, both physical and mental challenges.
He didn't walk until after 2/12 y.o.
He started early intervention at 2 years old. He was diagnosed at 5 with retinitis pigmentosa. I was devastated and he handled it with grace.
He wasn't diagnosed with Cohen's until his 20s. It was through genetics testng at Casey Eye Institute.
He is now 40 and his vision Is just about gone. He can see certain lights. He gets frustrated at times but mostly goes with the flow. He ha a wonderful sense of humor, is friendly, loves bowling, rodoes, movies and horseback riding. He lives for Disneyland and Disney World. He lives at home.
He is the love of my life and a blessing from God.

Dear Jan Just a few days back I came to know my daughter also has Cohen's. At this time I do not have any words to express what I am going through. I came through your post and want to thank you for sharing this brief. As I am new to this board, I don't know if I can message you to be able to connect to get more details. In past few days things are becoming clearer .. 'why me' is making more sense now. Your closing statement of Andy being your love of life and blessing from God is absolutely true. He couldn't have trusted the soul within Andy to anyone other than you. Now I understand why I love my daughter so much and why I consider her to be a blessing every day.

Posted 6 years ago by suharsh

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