|Venus with Aunt Doris on
|Freddy, Venus' classmate,
always cared for her.
|Uncle and Godfather
Miguel, bought Venus her
first and favorite doll, who
she called "Prieti"
|I met an
|"Fighting Against Fanconi Anemia"
Venus was born on October 24, 1989 in the Teacher’s Hospital in Hato Rey, Puerto Rico. Her parents are Rafael
Jesús Díaz Nieves and María del Carmen García Tirado. Her siblings are William Tirado García and Marta Iris Díaz
Venus was born by Cesarean Section because she was in a breached position. She weighed 7 pounds 8 ounces
and measured 21 inches. As soon as she was born the doctors discovered she had two malformed thumbs on
each hand, and she had an additional finger on her left hand. Her legs were extremely curved. She had mole-like
spots on different parts of her body. A month after she was born the doctors discovered problems with her thyroid
gland, condition for which she was treated at the Puerto Rico Medical Center.
Venus was baptized in “La Epifanía” catholic church in Carolina, Puerto Rico. Her godparents were Milagros
Fernández and Miguel A. García.
Venus was a special girl loved by everyone. Her first birthday was celebrated with the Minnie Mouse theme, and
she received a lot of presents from her grandparents, aunts and uncles and from her parents friends.
When she was eighteen months old, she wore orthopedic braces to straighten her legs, which she wore for a year.
After correcting her leg problem, her parents decided to do something about her hands. They received much
advice in order to choose the best option.
Venus sat in the middle of a room while doctors studied and discussed the strategy to follow. Dr. Jan Pierre
Segarra was the doctor who performed the operation. By that time Venus was 2½ years old. Although the
operation was a success, her parents decided to let Venus grow up and have her decide when to get operated
When Venus was three years old she was taken to the Regional Hospital of Caguas, Puerto Rico for a simple cold.
After seeing the lab results, Dr. Ina Serrano, a hematologist, called Venus’ parents. Her blood platelet count was
72,000 (a normal count is between 150,000 to 440,000). The doctor started treated Venus with Prednisone during a
period of a year. She would increase and decrease the amount but would never say what was happening to
Venus. She just alerted Venus’s parents about something wrong regarding her bone marrow. She told them to pay
attention in case they start seeing small spots on Venus’ skin. This could be a sign that her platelets were too low
in which case her marrow could be failing. The first time this actually occurred was horrible for both Venus’
parents and her grandparents. They thought at that moment that they would lose her.
It was a false alarm. After thanking God, Venus’ mother decided to celebrate her following birthday in a big way. It
was celebrated at the Luis Muñoz Marín Park, in Puerto Rico.
Three months later, on January 16, 1993, Venus received the surprise of a new baby sister. Her paternal
grandmother wanted to name her Marta. Venus was very jealous with her little sister. She didn’t like anyone to
touch her. That little sister within the coming years would become her confidant.
Her mother’s cousin, a nurse, recommended they visit Dr. Luis Clavel at the San Jorge Children’s Hospital in
Santurce, Puerto Rico. After performing various test Dr. Clavel informed that Venus had a rare and, up to then,
little known condition called Fanconi Anemia. The hardest part was finding out that they could lose her before her
20th birthday. He also informed them that the Prednisone she was taking was of little or no help to her condition,
so he started eliminating it from her system, which took 1½ years. Her parents took her to a naturopathic doctor
who started a treatment to eliminate the Prednisone found in her body had swelled due to its side effects. Venus
lost between 20 to 30 pounds with the treatment.
When Venus was four years old she went to prekinder at the Baptist School in Juncos, Puerto Rico, where her big
brother William (TD) also attended. Her achievement day was celebrated at the River Convention Center of
Juncos. For Kindergarten her mother decided to enroll both of them in the school where she worked: Clara
Maldonado de Arámburu School. Her purpose was to keep Venus as close possible due to her condition. She was
in this school from Kindergarten to fourth grade. Her little sister, Marta, also attended this school when she was
old enough. In her fourth grade, Venus confronted problems with one of her teachers and asked her mother to
transfer her to Pedro Rivera Molina School, where her cousins Joshua and Kevin attended. Venus and her sister
were transferred to this school. She stayed in that school until her seventh grade.
Venus continued growing conscious of her condition but without limiting herself out of enjoying those things she
liked. Her parents, specially her mother, made sure she lived her life as normal as possible. It was clear that
Venus could not expose herself to a lot of things that a normal child would. She had to take extra care of not being
exposed to any sickness or contagious disease. She couldn’t receive wounds because of her low platelet count,
which could cause her to bleed internally.
Gradually, Venus’ bone marrow worsened. Her hemoglobin count also started to lower. In this stage Venus started
receiving blood transfusions every six to twelve months. Her parents saw the hurricane at the end of the horizon
and it was closing in on them. But they had faith that they could cross it each holding on strong to their daughter’s
On April 2003, on recommendation received by their doctor, they went to Cincinnati Children’s Hospital Medical
Center where lots of studies and evaluations were performed on Venus, and the doctors discovered she had pre-
leukemia. This condition made matters worse with her pre-existing condition of Fanconi Anemia. Dr. Richard Harris
recommended they perform a bone marrow transplant on Venus as soon as possible. The doctor gave them a
month to put their matters in Puerto Rico in order and to return, but Venus’ condition worsened and they had to
return a week and a half after to Cincinnati. Venus started chemotherapy treatment by mouth in June of that year
and in July she started receiving it by vein. She then received a total radiotherapy before receiving the bone
On August 13, 2003, Venus received her bone marrow transplant from an unknown donor. The transplant was a
total success, to such degree that she was released 22 days after receiving her transplant. In September of that
same year, she landed in intensive with water in her lungs and kidney failure. After two weeks she recovered and
returned to the transplant unit. Venus kept on struggling with the meals and medicines she received. On October
20, 2003, she was released from her hospital room and sent to her special room in the Ronald McDonald House.
Both of her grandmothers, Flora Nieves and Gertrudis Tirado, did everything to please her during those two days.
From Tuesday night towards the following Wednesday morning, Venus started coughing, she was taken to the
hospital and instead of getting better her cough got worse to the degree that she had to be taken to the Intensive
Care Unit. Her mother called her father indicating that he had to go to the hospital because Venus was not doing
well. Her respiratory problem worsened to the point where the doctors had to intubate her. In spite of all the
doctors and nurses efforts to help her, Venus passed away at 12:00 in the afternoon on October 23, 2003, the day
before her 14th birthday.
|Tito Trinidad, Champion
Boxer, makes one of Venus'
dream come true.
|Venus playing with her brother
TD who she adored.
|Michelle and Stacie were
Venus' favorite nurses.
|Tania, Venus, Joshua,
and under the water,