I cannot begin to thank everyone for the outpouring of love, sympathy and comforting messages since the tragic passing of my beloved sister Paula.
At a very young age my parents Mollie and David taught me the true meaning of love and caring for others. I owe a lot to Paula. Because of Paula, I knew it was my mission in life to stand up and fight for those who could not fight for themselves. In essence Paula created the “Mouth That Roars.”
Paula was my comfort zone. Whenever I would feel down, I would visit her, take her for a long ride, and get nothing but pleasure as she looked at me and held my hand. She rocked to the music on the radio, devoured her hamburger, ice cream, and soda. I was everything to her as she was to me.
I was educated very early in life about the unanswered and unexplained terrible tragedies we all face. Hopefully one day we will have answers to the whys and ifs.
Until then, I cannot understand why my innocent, loving, and harmless sister was born with such a developmental disability. It broke my parent’s heart placing her in Letchworth Village. I remember them spending their life savings on a car so we could visit her each and every week.
Then came the Willowbrook/Letchworth Village scandals, I cried with my parents as we watched Paula on the evening news lying on the floor partially dressed and drenched in urine.
And, now the biggest tragedy of all, some sick pathetic animal raped Paula and infected her with a parasite. I continually ask myself, what did she do to deserve this? Whom did she ever harm?
Her bright blue eyes, striking eyelashes, beautiful red hair, and eternal smile that brought nothing but love to everyone who knew her, is now gone forever. Why?
I will never understand after spending three months at her bedside in four hospitals and doing everything possible to get her the best medical care, the very day the doctors rejoiced that her ailment was easily curable, she dies because of neglect.
Paula was found unconscious with no blood pressure or pulse for at least 30 minutes, with a health aide at her bedside, and me telling her nurse she appeared to be breathing very heavy before I left that evening.
I spent the next week with Paula in ICU, and even though her blood pressure and heart rate went back to normal, there was no oxygen in her brain for her to live.
Doctors were in shock and cried hysterically with me. They too did not understand how it could happen. It was as if God wanted us to find out the mysterious illness ailing Paula, but her time was up anyway. I thank God my parents were not alive to live through this.
Paula reached Mount Sinai Hospital through the breathtaking efforts of Town of Thompson Supervisor Tony Cellini, Rabbi Eleizer Hager, and Dr. Michael Diaz. I will forever be grateful to them for their efforts to help Paula.
Mount Sinai doctors did not stop until they found the root of Paula’s unusual immune breakdown that had the signs of Aids but was not Aids.
A biopsy from a simple colonoscopy administered by Dr. James George, that other hospitals did not do, revealed Paula had strongyloides. Doctors are convinced larvae from the parasite usually found in the Caribbean entered her body when she was raped.
It is especially heartfelt and extremely emotional for me that Assemblywoman Aileen Gunther has introduced legislation referred to as “Paula’s Law” mandating surveillance cameras be installed outside State run group homes and day programs. The Bill has also been introduced in the State Senate. God bless Aileen Gunther.
The big business of group homes over shadows care for the developmentally disabled.
The New York Times recently detailed this in a series entitled “At State Run Homes, Abuse and Impunity.” In vivid description they highlighted many of the problems and abuse.
Shivers still run up my spine as I recall the day I lifted and held Paula as doctors determined she was raped, and the cover-up at the group home that followed.
The State installed cameras outside of Paula’s home and day program due to my persistence. But, I will not stop until every resident in every group home is protected.
I appeal to members of our legislature and Governor Andrew Cuomo to immediately approve “Paula’s Law.”
What a great legacy Paula would be leaving knowing that she helped others live a safe and secure life. I pray to God that Paula is now in a better place. For me life will never be the same.