At the age of six months, Daniel Torres had already endured more medical hardships than most people experience in a lifetime, having undergone open-heart surgery two days after birth, followed by a liver transplant. Soon afterward he was diagnosed with Pulmonary Hypertension (PH), a rare, incurable disease caused by unusually small blood vessels, resulting in high blood pressure in the lungs that can lead to death by heart failure.
Without treatment, the average survival rate for individuals with PH is 2.8 years after diagnosis.
Now nine years old, after seven surgeries and connected to a life-supporting pump without which he cannot survive more than four hours, Daniel can add another rare experience to his resume. Earlier this month he received a personal blessing and a kiss on the forehead from the pope.
Daniel’s mother, Martha Gonzalez, wrote to the archdiocese in Philadelphia and the Vatican in Rome when she heard the pope was coming to the United States. “Daniel cannot travel by plane because of the altitude, so it would never be a possibility for me to bring him to the Vatican,” she said. “In the letter I opened up and I said it all. I was very, very humble to ask because I knew that a lot of people probably were writing.”
“If for any reason this pump stops, he only has four hours to go to a hospital and get it working again. Because after four hours he will die.” –Martha Gonzalez
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Quickly she wrote back asking if Daniel’s immediate family could join him, and she received additional tickets. Daniel was joined at the event by his father, Carlos Torres, his brother Sergio, 23, and his sister Mia, 8.
The night before the mass, Martha wrote a letter to the pope, describing PH and including a long list of sick patients, asking for a prayer. “I told my little girl to give this letter to the pope. She rehearsed the whole thing and said to him, ‘Take this list. Pray for all these people,’” recalled Martha with a laugh. “She actually commanded the pope.”
No cure
“When I was 18 weeks pregnant I received the most devastating news a mother could encounter,” Martha wrote in her letter to the Vatican. “My baby was coming to the world with two heart defects.”
Daniel has received extensive treatment at the Children’s Hospital of Philadelphia (CHOP). He gets tired and out of breath quickly and is prone to colds, which frequently lead to pneumonia, so the family screens all visitors for illness.
Although there is no cure for PH, the FDA has approved 12 treatments to slow the progression of the disease. Unfortunately none of those treatments are approved for children. Daniel was prescribed one of those treatments at one year old, with careful monitoring of dosage.
That medication was Revatio – popularly known as Viagra. “Viagra is a drug that was created to treat heart disease,” said Martha. “However, it was discovered that it was working for other people’s problems.”
Daniel takes Revatio three times a day to dilate the blood vessels of his lungs. At about five years old doctors added another prescription, Tyvaso, to stop progression of the disease. “It was inhaled,” explained Martha. “But you can only take so many inhalations a day, so if the disease increases you can’t have more.”
In April of this year it was discovered that the disease had progressed, and Daniel was switched to a subcutaneous Remodulin pump. The infusion pump releases the medicine steadily and must be replaced every three days. It cannot get wet and it cannot stop running.
“If for any reason this pump stops, he only has four hours to go to a hospital and get it working again,” said Martha. “Because after four hours he will die.”
Support from the North Bergen school system
Because his immune system is compromised and he is prone to illnesses, Daniel has had to miss school on numerous occasions. As a fourth grader at Lincoln School, he receives strong, ongoing support from the North Bergen school system.
“The school helped me and provided teachers to go to my home,” said Martha. “They also sent a speech therapist. So I’m very thankful to Mayor Nicholas Sacco and Dr. George Solter, the superintendent. They’re very family oriented.”
The school also installed a special air conditioning system in Daniel’s classroom because heat causes his symptoms to worsen.
“I have read the Bible and knew Daniel fought the lions and won, so I named my son Daniel,” wrote Martha in her letter to the Vatican. Nonetheless, despite being a devoted Catholic she found herself questioning her faith in the wake of his hardships.
“When my son was diagnosed I was hopeless,” she said. “I struggled even with religion. I thought, ‘Why?’ Because my son just had a transplant. We thought he was cured, he was going to have a normal life. And then he was diagnosed with another incurable disease.”
Daniel rarely attends church, due to his weak immune system and the possibility of contracting illnesses. But earlier this year he began asking his mother about religion.
“This year he started to feel fear about what will happen to him,” said Martha. “In April when we found out that his disease had progressed, he had to spend a long time in the hospital. I think he felt like he was not coming out. A volunteer gave us a children’s Bible so we started reading to him from the Bible, and that started his interest. And then he had a little prayer that a friend of mine gave me and he started reading it. And now sometimes at night he wants to say the prayer. It’s not a Catholic prayer, it’s just a prayer in English.”
It was his new interest in religion that inspired his mother to write the pope when it was announced he was visiting the States.
Advocating for treatment
When Martha, who works in New York for a national investor in affordable housing, first learned of her son’s medical condition she educated herself thoroughly on every aspect of the illness.
“First of all I informed myself about the disease so I can ask the right questions of the doctor,” she said. “That’s important for any caregiver to do.”
From there she became a dedicated advocate for PH treatment, attending international conferences to speak about Daniel’s condition. She was invited to Spain, Costa Rica, and elsewhere to raise awareness about the disease in Spanish.
That led to her applying for and receiving a $5,000 grant from the Pulmonary Hypertension Association to create a website in Spanish and Portuguese to provide information on the disease. With oversight from a Stanford University physician and a team she assembled in Colombia, Brazil, and Mexico, she and her team spent a year creating the 180-page site. It was launched in 2014 and this year she secured another $1,000 grant to update it.
And she’s not stopping there. November is Pulmonary Hypertension Awareness month and Martha will be going to congress on Nov. 19 to lobby for H.R. 3520, the Pulmonary Hypertension Research and Diagnosis Act of 2015.
“H.R. 3520 is a bill that would require the federal government to put together a committee of representatives from different agencies currently working in the field, focused on improving health outcomes for individuals living with PH by advancing education and research in PH and increasing early and accurate diagnosis of the disease,” she said.
By telling Daniel’s story to New Jersey legislators, she hopes to get the bill passed and lower medical costs, among other things. Currently treatments can cost up to $25,000 a month for PH victims.
“If this bill passes it will be better for every state’s system because the medication is so expensive,” she said. “I’m very confident that I’m going to get it passed. And then I’m going to go to New York. And then I’m going to go to Pennsylvania. Or Connecticut. That’s my plan.”
Because PH is often misdiagnosed as asthma, she urges anyone with symptoms to see a doctor immediately and ask pointed questions.
“Daniel was diagnosed when he was one year. He has survived the disease for eight years and he is still thriving,” she said. “Early diagnosis is imperative.”
Art Schwartz may be reached at arts@hudsonreporter.com.