Joseph’s Salon of Palmetto Bay is hosting another charity “Cut-AThon” on Sunday, Apr. 22, from 10 a.m. to 3 p.m. This event is to benefit the Cystic Fibrosis Foundation, and came about because the salon’s operators, John Valentine and Joseph Alves, encountered a special little girl named Delany Binker.
“Delaney’s grandmother Bonnee Binker comes to Joseph to get her hair done,” Valentine said. “A few months ago Bonnee was getting her hair done when she had mentioned about going to Washington, DC, to lobby members of Congress to support the EXPERRT Act, and how this would help people with incurable diseases.
“She also mentioned she took the story of Delaney and left it with all the members of Congress. After hearing this and learning more about what Cystic Fibrosis is, both Joseph and I got with Bonnee and asked about how we could help. And that’s how we came up with the Cut-A-Thon.”
The EXPERRT Act is an acronym for “Expanding and Promoting Expertise in Review of Rare Treatments.”
Delaney, a precocious 18-month-old, lives in South Florida with her parents, Brian and Carolyn, and the family dogs. Although she seems perfectly healthy at first glance, when she was just 15 days old she was diagnosed with the life threatening genetic disease that affects the digestive and respiratory systems. She has to take enzymes before eating any meal or snack, and has taken over 7,000 pills so far in order for her body to process the nutrients from the food.
Delaney receives Chest Physical Therapy every day, with her chest and back each pounded for 10 minutes in order to loosen the mucous. When she gets older she will wear a vest that will do the same job and for a longer period of time.
She requires two different medications in breathing treatments through a nebulizer to three different medications in the near future, and she will spend three hours a day breathing medication through a machine. Over time, despite all these efforts, her lungs will harden and the only thing that will save her life is a double lung transplant.
“What a wonderful little girl,” Valentine said. “It just feels good to do something for someone. We get a genuinely awesome feeling when we help someone who truly deserves it. We find this feeling is hard to come across. It’s better than watching your loved ones open the presents you bought them on Christmas morning. Let’s face it, the world would be a lot more harsh without charity and giving.”
For the charity cut-a-thon, haircuts are $25 and manicures are $15, with 100 percent of all proceeds going to the Cystic Fibrosis Foundation. It is estimated that CF afflicts 30,000 Americans.