What PAH Means to Our Family: Martha Torres

July 18,2018

When you meet my son, Daniel, he looks like any preteen sitting on his bed in his room playing video games. What you wouldn’t know is Daniel sits down most of the day so he doesn’t experience shortness of breath. He plays video games to escape from the fact that he is a very sick young man.

Daniel was born with two heart defects that were repaired when he was only two days old. After his liver began failing, we discovered he also had biliary atresia and needed a liver transplant. Daniel was lucky enough to receive one when he was just six months old. We thought everything was over, and we could bring our baby home to finally start our new life.

But it only lasted six months. At barely one year old, Daniel was diagnosed with Pulmonary Arterial Hypertension (PAH). We were terrified when we heard the word “incurable.” We felt helpless, but tried so hard not feel hopeless.

What does PAH mean to our family? It means tons of hand sanitizer and masks. It means long doctor visits and lots of tests, which are difficult both for Daniel and for our family. It means I have to miss my daughter’s performances because I’m at the hospital with my son. It means waking up three times a night to check if my son’s infusion pump is running. It means we have to give up any wants and replace them with needs, such as an organic diet, a special bed, and a handicapped bathroom. It means no answers to Daniel’s questions of why he is sick and can’t get cured.

Yet despite his illness, when I look at my son I see endurance, courage, and compassion. Daniel is a warrior who has taught me to go on despite the struggles. There are times when I feel like quitting, like when the tubing from his pump gets stuck. I try and try to unwind it, and I can feel my frustration growing because I know if I don’t get it straightened out, I’ll have to put in another catheter, which is painful for my son. But then Daniel will look at me and say, “Mom, just keep trying! You can do it!” That is my message from above—to never quit. I will never quit because I want my son to be cured.

We have so many people who are hoping for a cure for this disease. Our family—my husband, Carlos, Daniel’s siblings, Sergio and Mia, and I—are a team, but some days, it feels like we all ran a marathon and we’re the only ones trying to keep hope alive for Daniel and other PH patients.

That’s why we are so honored that Ndali Ijomah, a participant in Team PH’s Tour of PHenomenal Hope Championship, is racing in honor or Daniel. We see Daniel and the thousands affected by this incurable and debilitating disease as heroes.They deserve the cure. They deserve to live. I’m thankful to the Let Me Be Your Lungs program for raising funds for PH research, for keeping us moving forward towards the finish line.

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