THALASSEMIA N ME

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Shirley


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Joined Jul 28 2010
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FEMALE
72 years old
United States
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THALASSEMIA N ME

About Me

My Name is Shirley Cammilleri-Huntoon I am the president of Cooley' S Anemia of Monroe county. It is in Rochester, N.Y. United States. MY first husband died at the age of 48 from thalassemia and my only child died from it  at the age of 34, Lisa was her name, she started a website called thalsite. com which is still up. I have been raising money for thalassemia for 17 years by running a weekly bingo game every Monday. A lot of this money went to research exjade. I am very proud of the work I have done, My daughter asked me to keep  it going from her death bed. I am re-married now to Terry Huntoon. I run a daycare out of my house. I have 3 dogs, a cat and a large fish tank to keep me busy. Thalassemia used to be an Italian and Greek disease,Now it is all over the world. My daughter was transfused from the age of 2. She worked for the Police Dept. up until her death. She got hepC from a transfusion when she was 20. I think she would still be here if it were not for that. I am glad to see another site for thalassemia (Cooley's Anemia) Good Luck to you. Shirley Cammilleri-HUntoon

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2 Comments

Reply hisham
2:01 AM on December 20, 2013 
Respected madam
I have belong to Poor Family in sri lanka. Dear Sir Major thalassemia patient my sister hiqma banu last 15 years.pls help me about this matter. Sir i have belong to very poor family, and i could not afford this expenses please help us this issue. I have need to Desferal Infusion Pump (medis infusa d.slt). I could not afford this pump and not available in sri lanka. I am very thankful to you please help us. I am waiting your reply thanks. GOD give you long life and your whole Family
Reply Goh Chun Hui (Jack Goh)
5:52 AM on July 29, 2010 
Sorry Shirley to heard what you had gone through, thanks so much for joining the site that mean so much to me, best regard to you.