"He was born March 5th 2012," said College Station resident Zack Varner.
Just one month after Beau Varner was born Zack and his wife Jessica would receive news that their first born's life would be changed forever.
"Within the first month of Beau's birth, the newborn screening came back positive," said Varner.
Beau was diagnosed with Cystic Fibrosis.
"It was more of just shock,” said Varner.
Cystic Fibrosis, or more affectionately known as CF, is a genetic disorder and affects the respiratory and GI Tract by producing thick mucus.
"It clogs the pancreatic ducts so they're not able to digest food, so this puts them at the inability to put on weight; and they also have nutrient deficits as well," Varner explained.
Children with CF are at an extraordinarily high risk for developing respiratory infections; which consequently causes a domino effect for other health risks.
"We just had to go through the acceptance phase and know that this is the new lifestyle that we've been dealt and figure out ways of how we can increase awareness of cystic fibrosis," said Varner.
Data from the CF Foundation Patient Registry, a tool that tracks health statistics from patients treated at CF Foundation-accredited care centers, shows that more than 45 percent of all people with CF in this country are 18 years or older. Also, the Foundation calculates the median predicted age of survival for people with CF. This number is based on a statistical method of using life table analyses developed by insurance companies to calculate trends in survival.
Varner and his wife started a non-profit called Beau Means Business.
"One thing we try and emphasize with Beau Means Business is proper nutrition and physical activity,” said Varner. “In the past, some kids with Cystic Fibrosis, some of them didn't live until their 10-years-old and they thought their lungs were too fragile to support physical exercise.”
Beau Means Business promotes the mindset that daily exercise is not an option, rather part of a daily routine for treatment.
"Being physically active helps clear mucus out from the lungs so therefore it's not an optimal environment for bacterial growth," said Varner.
In 2009, the median predicted age of survival was in the mid-30s. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2009.
“The biggest barrier is that we can't have our kids interact with other kids on a daily basis because we don't want them to exchange microbes with one another,” said Varner. “That's the most difficult part about this disease is that we can't have a big family outing and take all the kids out to go play and they can talk with each other and relate to each other. The way they recommend is through social media.
Varner and his wife hope to connect with parents in the Brazos Valley to form a support group and hopefully raise money to fund research to cure the disease.
"We want to have him to live a normal life like any other kid and he can. CF doesn't identify who he is. Beau is going to be who he wants to be,” said Varner. “And that's the way we're going to raise him; it's a part of him, but it doesn't identify him."
Since cystic fibrosis affects the lungs of most patients, a large part of the treatment routine is to clear mucus from the airways by using different airway clearance techniques. These techniques use vibrations to help loosen the mucus in the lungs so it can be coughed out.
“It cost $16,000 for a vest for Beau,” said Varner. “We'd like to start a program to where if a business wants to sponsor a vest for a kid to take that financial burden off the family.”
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