A rare and life-threatening disease is making life for a Jennings three-year-old unimaginably difficult. Joel Belt has pulmonary hypertension, a cureless, typically hopeless disease. Although doctors do not expect Joel to live more than a year, the little boy and his family are not giving up the fight.
It is breakfast time in the Belt home and along with three-year-old Joel's waffles comes another round of medicine. Even though this routine keeps Joel alive, it comes with discomfort.
It was around this time one year ago that Joel started having breathing problems. "The doctor thought it was asthma and so we had him on the inhalers and were doing the whole asthma thing," said Joel's father, Josh.
But Josh, along with wife, Lindsey, had a gut feeling that asthma was not the problem. "You just keep thinking, okay something's not right, something's not right and around Christmas he got pretty sick," said Lindsey.
Joel ended up in the emergency room at Lake Charles Memorial Hospital in January. "They did an echo on his heart and the ER doctor walks in and says, 'your son has congestive heart failure,'" said Josh.
"It was like constantly being punched in the gut," said Lindsey, "because you get punched in the gut that your son has congestive heart failure and then he has a rare disease."
This rare disease called pulmonary hypertension is a narrowing of the small arteries from the heart to the lungs. The heart has to work harder to get the blood to the lungs, dangerously enlarging the right side of the heart. "Right now the right side of his heart is about two to three times larger than the left side of his heart because there's so much back pressure from his lungs," said Josh.
To control that, Joel has a central line into his chest, constantly pumping medicine. "That is the most aggressive medicine that he has," said Josh.
Joel wears a backpack for that medication and takes about 15 other medicines each day.
Doctors have given Joel less than a year to live. A double lung transplant is the only other option to treat this cureless disease. "We know lung transplantation is still in its early stages and it's the most rejected organ in the body, so while that is an option, it's not a cure," said Lindsey.
Still, the Belts are fighting for a cure. They have already raised more than $70,000 for the nation's only pediatric pulmonary hypertension program.
In the meantime, they wait and pray. "We are praying for a miracle, we're hoping he has a long life," said Lindsey.
"Our hope is not even in medicine, it is not in doctors. Our hope is in Christ and what he's done for us and what he can continue to do in us," said Josh.
The typical life expectancy for someone with pulmonary hypertension is about three to seven years from diagnosis. Joel's, however, was very advanced when it was detected.
The medicine Joel must take to stay alive costs about $600,000 a year, which is fortunately covered by insurance.
100% of the proceeds from the race will go to help raise awareness and research funds for PHA's Dr. Robyn J. Barst Pediatric Research and Mentoring Fund for Pulmonary Hypertension. This is the only pediatric PH research fund in all of the United States. You can learn more about PH at phassociation.org