After son's success, mom wants more awareness about pulmonary hypertension

When Arthur Raney was just three and a half months old, doctors at Albany Medical Center said he only had two to three years to live.

They'd discovered Arthur had pulmonary hypertension disease, a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery rises above normal levels and may become life threatening. 

Doctors performed an open-lung biopsy on him, and Arthur was put on a ventilator for four weeks. He had a 10 percent chance of getting off the ventilator.

Now, four years later, doctors say Arthur has a full life expectancy. His mother credits it to the treatment he receives at the Pulmonary Hypertension Center at Columbia Presbyterian Hospital in New York City.  

“Anyone who gets diagnosed with this disease needs to see a pulmonary hypertension specialist to survive,” says Arthur's mother Deanna Fajen. “There are medications out there that doctors do not know about because this disease is out of their league.”

The PH center put Arthur on Folium, IV medication, which he is still on today.

Currently, this IV medication is the best drug out there, but an inhale form is also available which came out this spring.

Currently, there is no cure for PH and stem cell research is being conducted to see if it will help patients grow new lung tissue. 

The “Make a Wish” Foundation is making a special trip to Arthur’s house tonight, Thursday November 19th.

The month of November is Pulmonary Hypertension Awareness Month and is dedicated to making the lives of present and future PH patients better. 

For more information, to a make donation, or to communicate with other patients and parents about the disease, visit www.phassociation.org