GENTRY — While most would never know it from watching their children play, one Gentry family is in a race for time, doing all they can to help in efforts to find a cure for a disease which threatens the lives of two of their children.
Steve and Lana Byrom of Gentry have five children: Leona, 11; Austin, 8; Clarissa, almost 8; Tyler, 7; and Ty, 6. Their lives are focused on their children but it’s not only the normal responsibilities most parents face, because two of their children, Austin and Tyler, suffer from cystic fibrosis a genetic disease with no cure and which cuts life expectancy in half.
According to the Cystic Fibrosis Foundation Web site, “cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (and 70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to lifethreatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.”
The Web site further explains: “In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.”
The average median age, according to the CFF Web site, is in the mid 30s, meaning half of those who have the disease don’t live that long.
For the Byroms, that means time is short and a cure or improved treatments are needed quickly so that their sons can survive the disease.
Steve and Lana are participating in the Great Strides Walk, a Cystic Fibrosis Foundation fundraising activity, to be held in Bentonville on Saturday, Aug. 28. They plan to participate as Team Austin and Tyler.
Austin and Tyler, like their sisters and brother, attend school, enjoy playing with friends and on most days appear fine, according to Lana.
Austin is a baseball fan and played on a Gentry Youth Organization team here in Gentry. He studies hard and gives 100 percent, Lana said.
“Tyler is passionate about music and drama,” she said. “He is goofy and makes people laugh.”
But what most don’t see and know is the struggle which is going on inside to fight a disease which progresses, and in which symptoms worsen, with age.
That battle includes twicedaily breathing treatments to clear mucus from the lungs and airways to make breathing easier and to prevent infection. The two boys spend hours hooked up to machines each day to clear their lungs. In the five years since they were diagnosed with CF, Tyler and Austin have each had more than 3,600 breathing treatments amounting to about 2,700 hours, Lana estimated.
Tyler also has a gastronomy tube so that he can be fed special nutrients, and Austin drinks a special shake twice a day. On top of everything, Austin also has benign rolantic epilepsy which causes him to have seizures in his sleep, Lana said.
The boys have to see a pulmonologist every three months to test lung function. X-rays, blood draws and medicines are also part of the boys’ lives.
“Tyler typically spends two to four weeks in the hospital each year to receive intravenous antibiotics,” Lana said.
He has been in the hospital eight times in the past five years, she said. He has even had surgery to remove an infected portion of his lung.
He just recently returned home after a lengthy hospital stay and is still taking strong oral antibiotics to clear up an infection. The antibiotics also upset his stomach and caused vomiting last week.
Not only do Steve and Lana devote themselves to the daily care and treatment of Austin and Tyler, they are hoping and praying that a cure can be found which will prolong the lives of their sons.
The federal government spends no money on research to cure CF, Steve explained. All the money for research and new medicines comes from donations. That’s why the Byroms are participating in the Great Strides Walk and seeking sponsors to donate money toward CF research and treatment.
“Great Strides is the Cystic Fibrosis Foundation’s largest and most successful national fund-raising event,” Lana wrote on a personalized Web page for the event. “This year, I’m walking in the Great Strides Walk at Bentonville on Aug. 28 in honor of Austin and Tyler Byrom.
“To see their story (on a YouTube video), you can go to: www.youtube.com/ watch?v=CbF5NtPftpU.
“Please help me meet my fund-raising goal by sponsoring me. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education ... Any amount you can donate is greatly appreciated,” she wrote.
Her personalized Web page is at: www.cff.org/ Great_Str ides/LanaByrom6164. If anyone wants to donate or register to walk with Team Austin and Tyler on Aug. 28, a donation page is also located at www.cff. org/great_strides/dsp_donationPage.cfm?registerin gwalkid=6892&idUser=345 055.
“Cystic fibrosis is a devastating genetic disease that affects tens of thousands of children and young adults in the United States,” she wrote. “Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That’s why your help is needed now more than ever to ensure that a cure is found sooner, rather than later.”
To learn more about CF and the CF Foundation, visit www.cff.org.