This year the couple has taken on the family chair position for the Poughkeepsie Great Strides Walk, which raised over $170,000. “Dayna’s Dream Team” raised over $14,000 so far this year for Great Strides, said Dana. Although the couple hasn’t kept track, they said, they are likely tipping the scales toward $100,000 raised since they started fundraising for Great Strides in 2006. The walks, Dana said, are attended by walk teams made up of families of those with CF, friends of those with CF and corporate/employee teams. Ninety cents of every dollar raised for the CF Foundation goes directly to finding a cure, they said. Dayna’s Dream Team grew into Dayna’s Dynasty, made up of Jen’s co-workers from the Kids Together Program — a youth program for children in Ulster County, There have been many other teams at the walks over the years for Dayna, Dayna’s Angels, KHS [Kingston High School] for Dayna, Rondout Ganders for Dayna and more.
The community support is extremely appreciated, because CF kids can’t even get together themselves to talk about it. “There is a culture of kids with CF, but unfortunately people with CF are not supposed to be around each other in close proximity as there is a risk they can pass an infection to each other which can be fatal,” said Dana. “There are ways around that with the Internet and Skype, which Dayna will probably get into as she gets older … There is that fact that parents of CF kids can usually only ask how each others’ kids are doing but usually the children don’t interact because the risk is simply too great.”
Fortunately, Dayna acknowledges that she must be a part of her treatment to stay healthy. She easily explains her disease to curious peers without shame or awkwardness, reports mom.
“Things that make us weak in the knees are those visits to her CF doctors and we get news that Dayna has developed a bacteria which could be causing her harm,” said Jen. “We refuse to allow her to live in a bubble, but you can’t help but second-guess yourself and ask, where did this bacteria come from, could I have done something more to prevent it. The other thing is hearing that another precious life has lost their fight against CF. There is still no cure for CF and although people are living longer, at least one person a day is losing their life to this disease.” The couple gets their strength from one another, they said, and from Dayna, family and friends. They added they are heartened by the medical advances they have witnessed in the past six years of Dayna’s life as well.
“We want people to know if you support CF Foundation you can see your dollars working as the medical advances are astonishing,” said Dana. “There is still no cure for CF but we are getting closer every day. I want people to support a great cause not only for my daughter Dayna, but for all those other families fighting for this cure. I want people to feel good about knowing their hard-earned money is being used wisely to extend the lives of those with CF and to find that cure someday soon. … I don’t want people to ever have to know or say they know someone who’s lost their fight against CF again.”
The Fifth Annual Benefit Monday at Mariner’s for Cystic Fibrosis tickets are $20 donation pre-sale and $25 donation at the door. Food will be supplied by Mariners Harbor and music by DJ Eddie Parker. There will be raffles and a door prize and 100 percent of proceeds support Dayna’s Dream Team and Cystic Fibrosis Foundation. For more information about CF, visit cff.org.
This story is dedicated to the memory of Jena Cassalina – “Bright Penny.”
