Help/advice needed

Discussion in 'Professional Chefs' started by keester311, Oct 3, 2005.

  1. keester311


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    Hello all. I am throwing a benefit for a sick little girl who lives in Chicago and I was able to get a guest chef for a day experience donated to our cause from Charlie Trotter's restaurant.

    I am posting this up here to hopefully entice some more people to come to the benefit and hopefully bid on this experience if they are a foodie. Mods, if this breaks your forum rules please feel free to delete this message.

    The short story is, this is my niece and she was an utterly healthy, happy, and normal little girl until 2 years ago. We had originally thought she was just acting out and going through a phase of being bad... Like a delayed terrible 2's or something. Things started to get worse and we noticed her vision seemed to be deteriorating. After 2 years of tests and visits with specialists from all over the country we finally got a diagnosis of Batten's Disease. Batten's disease is a genetic defect that essentially trips a trigger one day that starts your brain shrinking. This is why she started acting out, her frontal lobe was shrinking. Her vision has deteriorated to the point of being legally blind now and she is considered mentally challenged as well. (remember she was totally normal little girl 2 years ago). The prognosis is fatal but they are trying experimental drugs to slow the progression of this affliction. The financial burden of this testing as well as the daunting expenses of her future care and experimental medication is taking a toll on the rest of her family and that is why we are organizing this benefit.

    Entrance is $20, the event is on Oct 15th and is being held at 115 bourbon street on the SW side of the City. Food, beer, pop, raffles, silent auctions (obviously) and entertainment.

    For further information on this poor girl's affliction and our benefit you can look over

    Thank you for your time.
  2. jim berman

    jim berman

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    Professional Chef
    That's a heartbreaker. Best of luck on your benefit and best wishes to Becca.
  3. kuan

    kuan Moderator Staff Member

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    Retired Chef
    What a nightmare. I feel for you, Becca, her family, all those around her. Good luck and stay strong.