Family fights to cure cystic fibrosis

Apr 19, 2011

Twenty-month-old Nathaniel Giannandrea has the diet of most children’s dreams. He begins his day with a milkshake and chows down on chips, pizza, and ice cream until bedtime.

While most parents would cringe at the thought, Nathaniel’s mother Lia McInerney said it’s all she can do to maintain her son’s health.

At just nine days old Nathaniel was diagnosed with cystic fibrosis, a life-threatening genetic disease with no cure. It affects the digestive system by impairing enzyme production in the pancreas, in turn making it difficult to for sufferers to store fat and maintain a healthy weight.

Nathaniel and others with cystic fibrosis must take various vitamins, enzymes, dietary supplements, even heartburn medicines daily to keep their digestive systems functioning properly. In cases where medicine is not enough, patients may need feeding tubes.

"It's like a pharmacy," McInerney said pointing to the host of medicines on the kitchen counter. Nathaniel takes up to six pills with each meal.

Additionally, the disease causes thick, sticky mucus to build up in the lungs. One of the most common side effects is difficulty breathing. Nathaniel uses a breathing machine up to three times a day. Sufferers often require lung transplants as they get older. The median age of survival is 37-years-old.

Nathaniel and his family travel an hour to Children's Hospital in Boston for appointments with doctors. Nathaniel sees as many as eight doctors each visit, including a nutritionist, gastroenterologist, and a physical therapist.

The visits usually take up an entire day. But McInerney noted they have been getting less frequent.

"We hit a good stretch," she said, adding that Nathaniel hasn't been sick in a few months.

Cystic fibrosis makes sufferers more susceptible to upper-respiratory illnesses. Nathaniel has had pneumonia three times since he was born in July 2009.

Since Nathaniel’s diagnosis, his entire family has stepped up to raise awareness about the illness. The family is raising money for cystic fibrosis research and participating in the Great Strides Walk for Cystic Fibrosis in Quincy on May 22.

“We are just trying to do the best we can for the walk,” McInerney said.

In hopes of raising awareness and funds, Nathaniel’s 16-year-old sister, Brenna McInerney, enlisted the help of Wareham High School's Code Club to make bracelets for a cure. The bracelets can be customized with different names or sayings.

The family will also be holding a bake/yard sale at their home on 10 Vernal Street on April 30 from 9 a.m. to 2 p.m. All proceeds will go directly to the Cystic Fibrosis Foundation.

If you wish to purchase a bracelet or donate, contact Lia McInerney at 774-634-9711.