Donor Stories

 Young son inspires legacy gift to PHA

Torres-Gonzalez Family

Since Daniel Torres’ birth he has had to overcome obstacles that most young boys have not had to face. When his mother, Martha Gonzalez, was four months pregnant she knew her son would be born with a heart defect. Two days after he was born on Dec. 3, 2005, Daniel underwent open heart surgery at Columbia Presbyterian Hospital and his heart was successfully repaired.

However, a few days later, he was diagnosed with the rare incurable disease “Biliary Atresia,” a form of liver cirrhosis in infants. Daniel had a liver transplant when he was six months old at the Children’s Hospital of Philadelphia. “After Daniel’s recovery our family was finally beginning to get back to normal,” Martha says. “We went back to school, back to our jobs and thought that the worst was behind us.”

But at a routine scheduled checkup with his cardiologist, Martha and her family heard the diagnosis that would change their lives: Daniel had pulmonary hypertension (PH). “As a mother I was devastated to hear again the word ‘incurable,’ ” Martha says, “It didn’t seem possible that after all that we had been through our son would have to face another challenge.” Daniel was just one year old.

After the diagnosis Daniel’s doctor connected the Torres-Gonzalez family with the Pulmonary Hypertension Association (PHA). “Becoming a member of PHA was the best thing that has happened to us,” Martha says. “We were able to have access to information on treatments and we were able to hear the stories of others who were living with this disease. It gave us hope.”

Now four years old, Daniel is responding well to treatment and Martha, along with the rest of the family (Daniel’s father Carlos, brother Sergio and sister Mia), has continued to stay active at PHA. To honor their commitment to an organization that helped them in their time of need the Torres-Gonzalez family joined PHA’s Legacy of Hope Society and included PHA as a beneficiary of their life insurance. “We are dreamers, so we hope and pray for a cure for Daniel,” Martha says. “But we are realistic too. We need to make change happen and that is why we support PHA.”


 

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.