This Thursday, Feb. 26 Chunky's located at 267 Mineola Boulevard will host a benefit to help save a life. Proceeds from the event will benefit Lacy Pohlman, a 12-year-old Florida girl in dire need of a double lung transplant.
Pohlman suffers from Cystic Fibrosis, a genetic disease which causes the body to produce abnormally thick mucus which obstructs the pancreatic enzymes from reaching the intestines to digest food and clogs the lungs leading to fatal infections.
Symptoms of the disease include persistent coughing, wheezing or pneumonia and poor weight gain. This all stems from a basic defect in CF cells that result in the faulty transport of sodium chloride within epithelial cells (which are cells that line organs such as the lungs and pancreas) to their outer surfaces.
A child must inherit one defective copy of the CF gene from each parent to have Cystic Fibrosis. One in 29 Americans is an unknowing, symptomless carrier of the defective gene.
The disease affects approximately 30,000 children and young adults with 1,000 new cases being diagnosed each year.
Different gene therapies are in development that not only stem the disease, but may eventually result in a cure. However, the disease has taken its toll on young Pohlman's lungs which are operating at about 25 percent normal efficiency and must be replaced immediately.
Associate Executive Director for the Cystic Fibrosis Foundation Yolan Wolf said that when it comes to a procedure such as a double lung transplant it is because no other options are left for the patient.
Yolan emphasized the severity of the disease explaining that the median age for survival of one with cystic fibrosis is 31 years of age.
It is estimated that $125,000 will be needed to cover just the related expenses such as the Holiday, Florida family's temporary relocation to Duke University of North Carolina where the transplant will take place sometime in May.
Yolan's organization understands well the situation the Pohlman family now finds itself in, as the Cystic Fibrosis Foundation provides a network of support including nutritional, pediatric, and psychological for patients and their families.
The foundation founded in 1955, and a once long standing member of the Mineola community, supports studies and research into finding a cure for the disease.
There have been several fund-raising events so far, but this is the first in the area. Elaine DelVecchio is Pohlman's cousin and she is spearheading this Mineola event because along with the fact that it is her cousin in need, she feels a situation like this calls for action.
"Along with this situation being personal, it is about being generous," said DelVecchio.
According to DelVecchio many echo her sentiments, "The support from the community has been great. People are being very generous."
DelVecchio also credited Children's Organ Transplant Organization for the assistance they have provided for the Pohlman family.
It is through DelVeccio's daughter Gina that Mineola's Soundcheck Entertainment has become involved and will provide the live musical performances from The Project and Alive n' Kickin at Chunky's, 267 Mineola Boulevard in Mineola, this Feb. 26 at 9 p.m. Admission is $10 per person for people 21 and older.
For those wishing to donate money in the fight against Cystic Fibrosis, contact the Cystic Fibrosis Foundation, 420 Jericho Turnpike, suite 320, Jericho NY 11753 or call at 827-1290.
"The more funds we can raise, the sooner we can achieve our goal of a cure for the disease," said Wolf.