Family steps up to raise funds and awareness for CF, By Ginny Raue “I’m not afraid of storms, for I’m learning how to sail my ship.” Louisa Mae Alcott (1832-1888) West Milford Meet Ryder Werner, just a few weeks short of his first birthday, he’s a happy, friendly baby. He has white, angel-like hair, perfectly suited to him, according to his mother. He also has cystic fibrosis. Speaking with his mom, Heather Werner, you get the feeling that he is in loving, capable and protective hands that will steady the rudder should there be rough weather ahead. West Milford residents Heather, 25, and her husband Mark, 34, have two other children, 2-year old Austin and 10-year-old Hailee. Along with Ryder, they all play, the little ones romping in the dirt and chasing the dogs. The Werners decided early on not to treat Ryder differently. A healthy baby When Ryder was born he appeared to be a healthy baby. At two-weeks he was given a state-mandated screening test for cystic fibrosis (CF) and the blood work came back flagged. Within a short time the diagnosis was confirmed. “It was really hard, but I try to think about things in perspective. He has this disease and we will deal with it,” Heather said. Cystic fibrosis is an inherited, chronic disease that affects the lungs and digestive system. Thick mucous clogs the lungs and obstructs the pancreas, interfering with the body’s ability to break down and absorb food. There are approximately 30,000 children and adults in the United States who have CF and another 10 million who carry the gene that causes the illness. In the case of CF, the child must inherit two copies of the CF gene, one from each parent. If both parents are carriers of the gene but do not have CF themselves, a child has a twenty-five percent chance of inheriting the disease. Advances in research The severity of the disease varies widely. New research shows that there are 1,400 different mutations of the gene, which may account for the variables. Currently there is no cure but over the past 50 years advances in research and treatments have greatly extended life expectancy. The Werners are excited over the prospect of over 30 new drugs in the pipeline showing great promise. They know they are abundantly blessed because Ryder is doing quite well. He is treated with a saline nasal spray, a rescue inhaler when needed, pancreatic enzymes, pro-biotics, vitamins and hot, steamy showers. They are in the process of obtaining a RespirTech vest which vibrates to keep the mucous from sticking. “Because Ryder is a big baby he qualifies, size-wise, for the vest. He’s doing great but I know a lot of kids not doing as well, spending months in the hospital,” said Heather. “Other kids need more help. I don’t know Ryder’s future but if you saw my son you’d say there’s nothing wrong with that child.” Heather and Mark have become active in raising funds for CF, and as importantly, raising public awareness. They think of the parents now spending most of their time in their children’s hospital rooms - these are the people who were knocking on doors for donations a few years ago. They are the reason there is hope for the future. “Even drugs in Phase III clinical trials still have a way to go, but they may be hitting the market in two years. Before Ryder is even four years old, he may be able to take one pill a day and never have to worry about it again,” Heather said. This is our life’ Heather summed it up this way, “This is our life now and raising funds is important not only for Ryder but for kids who are not doing so well.” To that end, for little Ryder with the angelic white hair, and for all who are afflicted with CF, Leslie Wilson, a friend of the Werners, and Angelo LoBianco, owner of Big A’s Café at 1939 Union Valley Road in Hewitt, will be sponsoring a fund raiser on May 2 at the Café. There will be clowns and balloon animals from 1-2 p.m. and LoBianco will donate 10 percent of his total sales of the day to CF. Donation jugs are also set up at each window. “Every dollar counts, every dollar helps another child breathe a little longer,” Heather said. For those afflicted with CF, for those who care for them, they should know they are not sailing through their storms alone as long as there is charity in the hearts of their neighbors. Additional source: http://www.cff.org
Every dollar counts, every dollar helps another child breathe a little longer.” Heather Werner, mom of Ryder Werner, who has Cystic Fibrosis
How you can help
Come to Big A’s Cafe
Sunday May 2, all day
10 percent of profits will be donated to CF
Clowns and balloon animals from 1 to 2 p.m.