"I never thought my daughter was going to die from cystic fibrosis. I always thought she would beat it," said Petaluman Helen Dias. "But in the end, she lost her life to it."
Dias' daughter Diane was only 12 years old when she died from CF in 1987, but the tragedy inspired Dias to do something to honor Diane's memory and create a legacy for her that could help others.
Dias and her youngest daughter Amanda King, who also has CF, founded A Night of Wine and 65 Roses six years ago in Petaluma as a fundraiser for the Cystic Fibrosis Foundation. This year's event will be held on May 18, the day of Diane's birthday, and sadly, also the day of her death. Dias stressed, however, that the event is a happy occasion and celebration of Diane, and the contribution her name is making to find a cure for CF so that others may live.
"I have been given a gift of good health, and I felt that it would be horrible if I did nothing to justify her memory," said Dias of starting the fundraiser. "I want her life to mean something by doing something. I want to help find a cure for CF."
Currently, there is no cure for CF, which is an inherited chronic disease that affects the lungs and digestive system. The Cystic Fibrosis Foundation estimates there are about 30,000 children and adults in the United States (70,000 worldwide), with CF. The disease causes the body to produce an unusually thick, sticky mucus that clogs the lungs, leads to life-threatening lung infections and prevents the pancreas from breaking down and absorbing food properly.
The foundation reports that the average life expectancy for someone with CF is 37. King is now 34. Dias said that King's many years is both a blessing and an ominous reminder of the CF statistic.
"I don't want to have to worry about Amanda every time she has a birthday," said Dias, who recalled vividly the day Diane died. "It was April 18, 1987 when Diane left Oakland Children's Hospital for the last time. They sent her home so she could have a peaceful passing. She died on my lap on her 12th birthday. Her life, however, gave me the strength and energy to work at funding to find a cure."
Funding is vital if a cure is to be found. Dias said that CF is considered an "orphan disease," which means that because the condition affects fewer than 200,000 people, it receives no federal funding for research. According to the U.S. Food and Drug Administration, other orphan diseases include Lou Gehrig's disease and Tourette's syndrome. This status creates a struggle for CF patients when it comes to getting insurance companies to cover treatments and medications. It can also be difficult for patients to receive Social Security Disability Insurance.
"CF affects 30,000 Americans, but there are currently 10 million carriers," said Dias. "Two carriers have a 25 percent chance of having a child with CF. If that child doesn't get CF, they have a 50 percent chance of being a carrier. My older daughter, Julie Archer, is a carrier."
The lack of federal funding for research means it's up to individuals and families of CF patients to hold fundraisers for research. Dias said the Cystic Fibrosis Foundation has raised millions of dollars and worked to get FDA approval in 2012 for Kalydeco, the first drug to treat the underlying cause of CF in a small group of people with the disease. The Foundation also is supporting research that may eventually treat the root cause of the disease in all people living with CF.