Optimism from Despair
Old friend, Rick Davis reached out to me recently as he does every year, to raise money for his favorite cause. I caught up with him by phone from China to get the whole story:
The first sign that something was wrong came during the final weeks of Alta’s pregnancy; the baby was not growing. When she delivered the baby late in 2007, everyone was relieved to see the tiny, five-pound baby Elliot with all his fingers and toes and apparently doing well. Their relief would not last long.
Within a month, it was apparent that Elliot was not thriving. Even after repeated visits to the pediatrician the six-week old baby still weighed just five pounds. After three months their pediatrician sent them to a specialist. After he ran some tests, Mike and Alta got a call that would change their lives. Elliot had cystic fibrosis or CF.
CF is a genetic disorder that affects the lungs as well as the intestines, pancreas, and liver. Those affected by the disease lack enzymes that play a key role in clearing lungs of naturally occurring mucus and for digesting food, hence Elliot’s failure to grow. No matter how much he was fed, he simply could not derive enough nutrition from the food to grow.
As the extended family got the news and began to gather in support of the family lots of tears were shed and prayers were offered. Elliot’s grandfather, Richard (Rick) Davis, left his daughter’s home and went straight to his computer to begin searching the internet for information about CF. Of the experience, he says now, “nothing I found was good. Everything said this was a terminal disease with no known cure.”
One of the sites he found was the Cystic Fibrosis Foundation website where he signed up for the newsletter and clicked a box—without giving it much thought—indicating that he was willing to get involved.
The next morning Rick got a call from one of the board members for the CFF Utah-Idaho Chapter asking if he was willing to meet to discuss how he might get involved; he agreed. By the end of the week, Rick, a prominent attorney in Salt Lake City, was elected to the six-member board of the Utah-Idaho CFF Chapter (UI-CFF), which he now chairs.
Just three weeks after Elliot was born, his cousin Clare was born. She was born without any apparent difficulty and though she was a docile baby, she seemed healthy until about a year after her birth, she caught a cold and could not shake it for several months. When her pediatrician learned that Clare had a cousin with CF, the light went on, tests were run and a second CF diagnosis in the family was made.
Rick has devoted himself to this cause with the passion and enthusiasm of a man racing against a clock that absent his personal effort would have him attend not just one but perhaps two of his grandchildren’s funerals. Over the years since the first diagnosis, Rick has learned that there is a great deal of hope for CF patients.
As Rick rallied family and friends to the cause, the sense of tragedy that befell them began to ease. The family—always close—pulled together as never before. Everyone chipped in to help with fundraising, child rearing or the seemingly endless treatments. CF patients require nebulizer treatments and chest percussion treatments delivered through a vest twice or more each day. Each treatment can take an hour. The work alone is never ending.
As the family pulled together, they began to look at the disease as a blessing. They recognized that with a large extended family, good jobs and good health insurance, they were in the perfect place to care for these kids.
Rick began attending CF conferences regularly. At a CF conference in Bethesda, he met a mother of a six-year-old CF patient. The mother, despondent herself, was planning to leave the conference early to get home to her boy who had told her he was so miserable he was ready to “go back to Jesus.”
This painful experience helped Rick to recognize that not every family impacted by CF has the same resources, the same economic and social situation. For some it would seem simply too much too handle. He began to appreciate that CF “is a rich man’s disease” but that not everyone impacted by it is rich. Rick’s son Rick, Clare’s father, was having to pay $20,000 per year out of pocket—with health insurance. Rick has changed his job twice to find employers with more generous health insurance plans. Furthermore, even for those whose pocket books are adequate, the caregiving stress without an extended network was still overwhelming.
Through the parent’s group, Rick is making great effort to ensure that all CF patients gets access to the necessary treatments, regardless of their financial situation. For those with financial limitations there are a variety of programs available to help cover the almost infinite costs. Under Rick’s leadership, the UI-CFF expanded the parents’ group, shifting it from a self-help group focused on sharing members’ problems, adding social functions so that parents not only share their problems but their joys and their progress.
News in the CF world has been good since 2008. Last year a new drug, Kalydeco, that treats just a small fraction of CF patients—perhaps only 1,000 people in the U.S. But treat CF it does. One 24-year-old patient that Rick described had to quit singing and running in high school and could no longer even walk up stairs. On the new drug, within a week she felt better, could walk up stairs again and now sings like an angel. “We are on the cusp of seeing a dramatic change,” Rick says regarding the treatment of CF, with new drugs in the pipeline.
In order to increase funding, Rick worked to expand the size of the UI-CFF board of directors from six to fifteen members. He’s also worked to add more people who are not parents of CF patients—parents have enough to worry about. By drawing on the larger community and Rick’s personal network of well-heeled attorneys and other professionals in the community, the exposure of the organization and its success have dramatically increased.
When Rick joined the board in 2008, the UI-CFF was generating about $300,000 per year. In 2011, revenue for the organization was $870,000. The chapter even won an award from the national organization for having the largest increase in revenue year over year. At one event, the annual gala, in 2011, the UI-CFF generated more revenue than the organization generated in all of 2008.
Rick explained the dramatic change in CF treatment over the years this way: In 1950, a CF diagnosis usually meant that a child had just a few years to live. By 1980, a CF diagnosis typically meant a child could likely attend high school but would not likely be at graduation. Today, a CF patient—like a diabetic—is likely to live long enough to die from something else.
This also means that Rick can expect to have all of his grandchildren attend his funeral to celebrate the mark he left on the world.