lying to families following donation ...

lying to families following donation of eyes

Posted in the University of Iowa Forum

upset

Huntington, WV

#1 Jan 5, 2012
My father passed away last March. Our family has a rare genetic eye disease called doynes honeycolmb retnal dystrophy. I donated my fathers eyes to them for the continued study of this disease in hopes they would find a cure for the problem. A representative of the university came to my hometown and did eye exams and blood draws on my family. I was told then that my childrens blood would be tested for this disease. I was told to contact them back in 2 months for the results. I started trying to get the results in may but was always told that the results were not back yet. Around christmas of 2010 i was told that they were not going to test the blood from my children. I have spent 2 weeks trying to get the blood tested. I have talked to several different drs and gone as high as one of the vice presidents to try to get this done. my answer is still no unless i go through a family dr. i feellike they have lied to me on more than one occasion and that once they got my fathers eyes then that was all they wanted. anyone have any ideas on who i could talk to to maybe get this resolved. it is hard to get my kids to their drs as they live with their mothers. two of them are 11 hrs fgrom me and the other is 6 hrs away. someone please help

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