Four-year-old boy fighting to live with rare lung disease - KPLC 7 News, Lake Charles, Louisiana

Four-year-old boy fighting to live with rare lung disease

One year has passed since a Jennings family was told their then three-year-old son, Joel, would likely not live through the year.  Joel Belt has a rare, cureless lung disease and even though it has made his young body weak, he is still fighting today as his parents fight for more pediatric pulmonary hypertension research funding.

There have been a lot of changes in the Belt home over the past year.  The family is in a new home and brothers Josiah, Judah and Joel are now home-schooled.  This change was doctor-recommended to keep germ exposure low for four-year-old Joel, in the fight for his life with pulmonary hypertension (PH).  "There has not been much worsening," said mom, Lindsey, "but definitely no improvements, which has been kind of tough."

Joel is on record doses of medication and has a 24-hour central line to his heart, pumping it full of drugs to keep his arteries open.  "Because your heart works with your lungs to get oxygen and blood flowing through your body, it causes heart failure," said Lindsey, "so the heart doesn't get enough blood flow and oxygen, so it's pumping overtime to get it to the rest of the body."

Prior to Joel's diagnosis of PH last year, he was healthy.  Doctors thought the breathing problems he developed matched up with asthma, a common misdiagnosis for PH patients, but a scary trip to the emergency room showed much more.  "They told me he was in heart failure," said Lindsey, "a three-year-old in heart failure?  That was not on our radar.  He was healthy up until a few months before that."

Since the PH diagnosis, Joel has gone from resisting his syringes full of medicine to understanding that it is a critical part of every day.

Josh and Lindsey say their strength in this journey is through their faith and hope, something they felt grow when they hosted the area's first Color PHor a Cure last fall.  "God just took what we did and he blew our minds," said Josh.  "He did more than we could've ever imagined."

That event raised $134,000 for pediatric PH research.  "They find doctors and researchers that are doing specific studies for pediatric PH research and they give them grants to do the type of research that they need to do," said Josh.

The Belts are organizing another run with the goal of raising $200,000, with the first $50,000 funding the Joel Belt Grant.  "Joel will have a grant in his honor that we will give to a medical professional that will do specific pediatric research on behalf of Joel," said Josh.

While the Belts might not see the impact of that money on Joel's health, it brings them hope of being that much closer to finding a cure that would touch the world.  "We have learned to take it a day at a time and just definitely hold on to hope that a cure can be found," said Lindsey.

You can be a part of what is set to be the world's largest fundraiser for PH research on Saturday, October 11 at Jennings Park and Recreation.  This year's Color PHor a Cure 5K takes off at 9:00 A.M.  Click here for event and registration information.  300 volunteers are needed for pre-race and race day festivities. 

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