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Wednesday, August 24, 2011

In The Eyes of a Suffering Child

By Carol DiPaolo
Special to ASSIST News Service

STATEN ISLAND, NEW YORK (ANS) -- Those eyes were sadly familiar to me. Empty. Hurt. Melancholy. Those big, brown eyes void of hope. The eyes of a dying child pleading for help to ease their pain and misery.

President Bill Clinton, Joey DiPaolo (age 14), and Carol DiPaolo, pictured at the White House in 1993

During the recent Greater Philadelphia Christian Writer’s Conference in August (2011), I was eager to attend the evening service to hear ANS founder Dan Wooding give his Friday evening keynote presentation called “How to Become a Voice for the Voiceless”.

I entered the dimly lit room and quietly found my seat. The presenter, Becky Spencer, was addressing the audience. Images of frail, sick, African babies and children filled the two large screens. It didn’t take long for the pain in my heart to once again emerge, a pain I had neatly tucked away in the recesses of my mind and heart several years ago. I was looking into the eyes of children dying with AIDS.

The sad images on the screen that night are today’s children dying with AIDS in Africa. The babies I held in my arms were yesterday’s babies with AIDS in America. They were the border babies left to die in lonely hospital pediatric wards with no mothers to love them or hold them. The border babies in America were the tiny lepers of yesterday. With no medications to treat them, the babies I held in my arms longed to be put out of their misery and pain. Their healing came when God’s mercy took them home to be with Him.

I didn’t choose to become involved in the AIDS epidemic, to hold these dying babies, to cry for them, to fight for them. I was placed there by the hand of God.

Carol DiPaolo, Joey DiPaolo (age 16) AIDS Educators and Activists pictured in 1995

It began back in 1984 when my four-year-old son, Joey DiPaolo, had open heart surgery. During the operation, he received 19 units of blood; one of the units was contaminated with the AIDS virus. It was on Jun 21, 1988 that we discovered the terrible news that Joey had AIDS. Instead of providing life, the blood he received was a death sentence. Joey was only eight years old and was given one year to live.

AIDS was something you read about on the front pages of your newspaper with headlines like – “The Great Rock Hudson Dies from AIDS.” I certainly was not expecting to hear that my young son would die from the same disease that Rock Hudson had, that homosexuals and IV drug users had. I was a Sunday school teacher, a home Bible study leader, a Christian mother. Sadly, it would be the Christians who would turn their backs on my family and who would greatly fear us. Ironically, the people I detested most would be the ones to embrace us: the homosexuals, the people from the gay community, the people who taught me how to be my son’s greatest advocate.

“What good can come from this?” I cried out to God. I didn’t just touch the hem of His garment; I grabbed, tugged and pulled in desperation not letting go until I heard from heaven. Like a little child, He took me by the hand and walked me down a path I would not have chosen on my own. In looking back, it’s a road I have been blessed to travel. The road twisted and turned through trials, tribulations and triumphs; a road that God used to show me his love, power and might.

Death for my son was almost certain with no medications approved to treat pediatric AIDS. The question was: when? Fearful that I would lose my eight-year-old son, I went on a 21-day fast. The word AIDS disintegrated into ashes falling to the ground and the word and name of Jesus grew until it overshadowed AIDS in the battlefield of my mind. Jesus was greater than AIDS. The flames of the trial would grow hotter.

Carol DiPaolo speaking at The Joey DiPaolo AIDS Foundation fundraising event - New York City, April 2008

In February 1990, Joey went into septic shock. Bacteria had entered his bloodstream. The doctors were certain that Joey would be dead within forty-eight hours. His temperature approached 107 degrees. His blood pressure was critically low. Blood oozed from every orifice in his body and his kidneys failed.

“If you love him, pray that God would take him,” was the advice I received from the doctor in the ICU. At best, the doctors predicted that Joey would be brain-damaged and probably an amputee if he were to survive. At the end of the forty-eight hours, Joey’s condition improved. Not only did he survive the event, he came out totally unscathed.

After the near-death experience, Joey decided he didn’t want to keep his AIDS diagnosis a secret anymore. “If people don’t like me, that’s their problem. I don’t have cancer. I don’t have ITP (low platelet count with an unknown cause). I have AIDS and if people don’t accept me, then, they really weren’t my friends to begin with,” was Joey’s new motto. It was his life. It was his decision. I would support my ten-year-old son. Although he was young in age, he was strong and wise in character.

On September 11, 1990, the headline in New York Newsday read: “Now My School Knows I have AIDS.” Alongside the headline was a picture of my son. This would mark the beginning of our public crusade in the AIDS epidemic. HBO portrayed a portion of our lives in a docudrama called “Blood Brothers -- The Joey DiPaolo Story.” It aired in December 1992.

I stand in awe at the many doors God opened for both my son and me, doors that I could not have walked through in my own volition. From the White House where we personally met President Bill Clinton to the Playboy Mansion where we shared our story to a few hundred people, God led the way for Joey and me. Our journey took us from the East coast to the West coast in America sharing our story in schools, colleges, churches and other institutes. Our story had been told in thirteen European countries.

It’s time for me to tell my story; a story from a Christian mother’s prospective. If you take Jesus out of the equation, it’s just another story. Without the Lord by my side, I would not have been able to stand strong in good times and in bad. I know my character. I am weak without Him. With the Holy Spirit leading the way, I was able to make decisions that kept my son alive.

I was able to have my son receive cutting edge medication that was not yet FDA approved. He opened doors for me to get my son enrolled into the largest government run research institute in America called The National Institutes of Health. Yes, it was a tradeoff. I handed my son over to science to become a “lab rat” placed on drug trials, but in return he received treatments that were not available to children living with AIDS at that time.

It is impossible for me to share my twenty-seven year journey with my son living through the AIDS epidemic since 1984. That’s why I am compelled to write my memoir titled “The Promise – A True Story of a Mother’s Journey Through the AIDS Epidemic”. I have been greatly blessed and happy to report that my son is turning thirty-one on September 5, 2011.

Christina Petosa and Joey DiPaolo married April 16, 2010

He is living a wonderful life and remains in good health. On April 16, 2010, he married a beautiful girl named Christina. She is HIV-negative and works in the medical field as an ultrasound technician. Doctors told me that Joey would not live to reach the age of nine. He would not live for me to see his wedding day. It was a day I dreamed for. It was a day I prayed for. In His mercy, it was a day God granted me to see. What a great God we serve; a God of the impossible.

It breaks my heart for the children’s images that graced the screen during the writer’s conference. My heart aches for them. They are the tiny lepers of today. Like the boarder babies of yesterday, they don’t have mothers to hold them, to feed and comfort them. Sadly, their mother’s lives are snuffed out from the AIDS virus. The pandemic rages in third world countries especially on the continent of Africa. We are blessed here in America.

Carol DiPaolo and Joey DiPaolo (age 31) on his Wedding Day, April 16, 2010

We have access to medication, clean water and knowledgeable doctors, unlike our brothers and sisters in Africa. In Africa, families are being wiped out. Orphans, too numerous to count, are being left behind with no one to care for them. Mere children are becoming the heads of households looking after younger siblings. Many are sick themselves with AIDS or caring for relatives stricken with the disease. Many live in denial. They fear they will be shunned by their relatives and neighbors. Burdened with a deep dark secret, they live in hopelessness. In shame, they die alone.

I wanted to shout “Here I am Lord. Send me,” but instead I sat silently burdened by the story their sad eyes told. If only I could hold them in my arms like I did with the boarder babies. If only I could whisper in their ears “Have hope. One day, this too shall pass.” I’m not sure when their “one day” will come. For now, most of these children will find their healing when they go home to be with the Lord. Their sad, empty, melancholy eyes will be filled with joy when they look upon the glory of God.

What can we do here in America? How can we help? Remember them. Pray for them. Find a reputable organization that has a mission to children living with AIDS in Africa and give. A dollar goes a long way. If you have talents, perhaps in the medical field, donate your talent. Go offering a help that is much needed. Ask God what you can do to ease their pain, to bring hope to a dying generation. As for me, I know one day I will be holding a child in Africa in my arms and the same love I showed my own son, I will show them. I stand ready to go if He sends me. Until, then, I continue to walk hand in hand with my Maker excited to see where the road will lead me next. I fear not and can do all things with Christ by my side.


Carol DiPaolo was born in 1959, raised in Brooklyn and now resides in Staten Island, New York with her husband, Michael Ventarola. Carol has two adult biological children, two stepchildren, three grandsons and a granddaughter expected to arrive in November 2011. After discovering that Joey had AIDS, Carol became a certified AIDS educator, AIDS activist and public speaker. The government chose Carol in 1991 to be the only National Pediatric AIDS representative to assist medical researchers in developing a drug trial that virtually eliminated mother-to-child transmission of HIV in the U. S. Carol personally met with President Bill Clinton at the White House and other government officials on Capitol Hill. Joey DiPaolo and Carol DiPaolo were portrayed in a HBO docudrama titled Blood Brothers-The Joey DiPaolo Story that aired in December 1992. Carol brought a law suit against the Greater New York Blood Center that aired for ten weeks on Court TV. She won the landmark case on her son’s behalf in 1995. In 1996, she co-founded The Joey DiPaolo AIDS Foundation, a nonprofit 501 (c) 3 organization. In 2000, Carol developed Camp TLC (Teens Living a Challenge), the first residential summer camp program for teenagers born and living with HIV/AIDS in the U. S. She and her son appeared on national television shows: Larry King Live, Montel Williams, Joan Rivers, Phil Donohue, Sally Jesse Raphael, Discovery, 60 Minutes, 48 Hours and others. Carol accepted Christ in 1979. Joey is 32 years old, remains in good health and was married on April 16, 2010 to a wonderful, non-infected young woman named Christina Petosa. Through trials, tribulations and triumphs, God has been faithful to Carol, Joey and her family. Her story will be told in a memoir titled: The Promise – A Mother’s Journey Through the AIDS Epidemic. She can be contacted by e-mail at: carolventarola@gmail.com 


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