From that day I’ve learned to always try to get what you need. You never know. For us, Pope Francis’s blessing is a need not a want,
Silver Spring, Md. (PRWEB) September 29, 2015
After watching Pope Francis kiss their nine-year-old son, Daniel, on the forehead and give him a blessing, Carlos Torres and Martha Gonzalez of North Bergen, New Jersey, are more hopeful than ever in their fight against pulmonary hypertension (PH). Daniel, diagnosed with PH shortly after his birth, sat in the front row at the Pope’s mass at the Philadelphia Cathedral. His eight-year-old sister, Mia, who attended the mass with her big brother, handed the Pope a letter that included the names of many very sick PH patients asking the Pope to cure the disease. “Take this list,” said Mia. “Pray for all these people.”
PH is high blood pressure in the arteries of the lungs, a debilitating disease that affects the functioning of the heart and can lead to death from heart failure. There is no cure and PH, while progressive, is often misdiagnosed as asthma or other less life-threatening diseases. Without treatment, the average survival rate is 2.8 years after diagnosis.
Daniel’s interest in God compelled his mother to write the Archdiocese of Philadelphia about her son’s PH journey. She sent a copy of the letter to the Vatican with a request that Pope Francis bless Daniel during his visit to Philadelphia. A week later, Daniel and his family received first- row passes to attend the Papal mass at the Philadelphia Cathedral.
“From that day I’ve learned to always try to get what you need. You never know. For us, Pope Francis’s blessing is a need not a want,” Gonzalez said.
Since Daniel’s diagnosis shortly after his birth, his family has been active members of the Pulmonary Hypertension Association (PHA), the country’s only comprehensive PH nonprofit, which for 12 consecutive years has received Charity Navigator's top rating -- four stars -- for fiscal accountability and transparency. PHA provides support for patients and caregivers; medical education; advocacy and awareness resources; and funding for research to find ways to prevent and cure PH. Gonzalez has been involved in advocacy, fighting for the Pulmonary Hypertension Research and Diagnosis Act, which would create an interagency coordinating committee and better access to care. She is especially active in advocating for the Spanish-speaking PH community. She is one of four people behind http://www.hpaqui.com, a Spanish- and Portuguese-language web site for the international PH community.
Daniel’s life started with open heart surgery and he was diagnosed with pulmonary arterial hypertension at barely a year old. Thanks to the early diagnosis of the disease, Daniel’s treatments have helped the now fourth grader thrive, in spite of the disease.
“My daughter Mia’s wish is a miracle for her brother so he can stop having the subcutaneous site on his arm,” Gonzalez said. “But Daniel loves his site because it gives him his medicine. Hearing him say that makes me realize that being sick is his ‘normal.’ This encourages me to continue pursuing a PH cure through awareness so my son, like many other patients, can enjoy life being healthy again.”
PHA will mark Pulmonary Hypertension Awareness Month in November and the association’s 25th anniversary in 2016, when it will celebrate its successes and continue providing resources to help patients, caregivers, health professionals and researchers conquer the disease.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA does this by connecting and working together with the entire PH community of patients, families and medical professionals. PHA relies on donations to fund its many programs, including early diagnosis efforts, more than 245 support groups around the country and continuing education for medical professionals through PHA Online University. For more information or to support PHA with a donation, go to PHAssociation.org.