HAZLET – For one pair of grandparents, raising teenage girls may be easier the second time.
After losing their two adult daughters to complications related to cystic fibrosis, Hazlet residents Maureen Cokelet, 66, and Charles Cokelet, 69, are raising their twin teenage granddaughters, Madison and Taylor.
Cystic fibrosis (CF) is a genetic disorder that primarily affects the lungs, pancreas, liver, kidneys and intestine. Long-term issues of CF include difficulty breathing and coughing up mucus as a result of frequent lung infections.
“I never imagined I would even have grandchildren,” Maureen said in an interview with her husband on March 16.
“But now it’s like here we go again. I tell (the girls), ‘you’re not going to get anything past me because I’ve done this already,’ ” she said with a laugh.
The girls, who are the children of the couple’s eldest daughter, Melissa Ann, were raised by Melissa’s younger sister, Amanda Lynn, after Melissa died in January 2012.
Melissa passed away after a 10-month hospital stay. She was waiting for a donor to provide her with a healthy set of lungs. The procedure would have been Melissa’s second double lung transplant, Maureen said.
Maureen said Madison and Taylor were 5 when their mother died.
“I was practically living at the hospital, so the girls just moved into Amanda’s house during that time,” she said, adding that Amanda raised her nieces until early this year.
Amanda often fell victim to severe ailments that were caused by her own CF diagnosis. Amanda would routinely suffer from what Maureen described as unfathomable ailments such as vertigo and a severe case of the shingles.
But Amanda always “bounce backed,” she said.
Previously, surgeons performed a double lung transplant on Amanda while she was in an induced coma. Years later, Amanda was diagnosed with lymphatic cancer.
“She had to go through chemotherapy and radiation. She had to have half of her intestines removed … then she went into kidney failure,” Maureen said.
She said, “Amanda never complained one day in her life” despite the long list of ailments she endured.
Amanda’s lungs began to deteriorate in 2018. Before Amanda could receive her second lung transplant, “she became chronically ill,” Maureen said. Amanda died in January and left Melissa’s children with her parents.
According to Cystic Fibrosis News Today, there is a 6.25 percent chance two siblings will be diagnosed with CF.
Maureen said she is thankful Melissa and Amanda lived to be 36 and 39 years of age. She said her daughters were both married, and divorced, and lived full lives. The optimistic grandmother reflected on a time when medical professionals told her Melissa would not live beyond a young age.
According to Cystic Fibrosis News Today, the average life expectancy for an individual who has been diagnosed with CF is 37.
Maureen said she is grateful her daughters had each other. Now her granddaughters have one another. Maureen called her relationship with her grandchildren “great.”
The couple said they are choosing to see the optimism in their situation.
“One (of the twins) looks just like Melissa and one looks just like Amanda. It’s kind of haunting,” Maureen laughed.
Charles, interjected, saying, “And I’m their favorite.”
Madison and Taylor do not have CF, Maureen said, but she explained that the girls are carriers for the disease. Other family members do not have CF.
According to the University of California, “Carriers for CF have no symptoms, but can pass the non-functioning gene on to their children. An individual must inherit two non-functioning CF genes, one from each parent, to have CF.”
The girls’ hobbies take after their mother and aunt, Maureen said, revealing that the twins are upholding their family’s love for participating in soccer. The teenagers participate on a travel team, she said.
As for their well-being, Maureen described the young ladies as strong and mature. And just like their mother Melissa, and their aunt Amanda, the adolescents are typical teenagers. They hang out with friends, will make their confirmation in two weeks and are preparing to begin high school in September, Maureen said.
“Our family and friends are unbelievable. We could not do this without everybody,” Maureen said, describing the support system provided by loved ones, friends and community members.
Maureen has moved into Amanda’s home in Hazlet to raise the girls. She plans to sell that home and move the girls into her home five minutes away. The teens do not need to change schools, she said.
In an interview on March 17, Mark Manginelli, a member of the Kiwanis Club of Holmdel and founder of the Breathe Foundation, said a collective donation was expected to be presented to the Cokelet family during a fundraising event on March 20.
The local charitable organizations that will make the donation are the RAINE Foundation, Jason’s Dreams For Kids, Rainbow Foundation, the Kiwanis Club of Holmdel, the Breathe Foundation and the Amanda Gambacorto Foundation.
“We know the family personally,” Manginelli said. “My brother and I both have cystic fibrosis. Unfortunately, this family lost both of their daughters to the disease … It’s challenging because (Maureen and Charles) are retired and need to raise these two young girls.
“We wanted to be able to give them a little something that can hold them over for awhile or maybe even be set aside for (Madison and Taylor’s) college (tuition),” he said.
Manginelli, 33, said he and his brother, Michael, 30, were both diagnosed with CF in 1990. Manginelli said they participated in CF studies and tests with Melissa and Amanda.
Manginelli said his family and the Cokelet family have raised money for the Cystic Fibrosis Foundation for 20 years.
