Dix Hills woman's message lives on

Even in death, Christina McDonald of Dix Hills has the chance to tell her story. McDonald, who died of cystic fibrosis only weeks after being placed on a lung transplant list, left a powerful message behind.

When I was diagnosed at three months of age, my parents were told I wouldn't make it to 13 years old. I would NEVER have a baby. Today, I am 25 years old and the mother of the most precious little girl in the world, whom I carried in my belly for 9 months. TAKE THAT CYSTIC FIBROSIS! :)

McDonald, who died two weeks ago at age 25, was a prolific writer. More prolific than even her mom, dad, brother and fiance would realize. She kept a blog. And special memory boxes. And made her way, always smiling, into more than 3,000 photographs.

She was a determined young woman with a triple mission: To pack as much into her life as possible, no matter her fragile health. To make sure her life had purpose. And to blaze a bright, strong trail that her daughter, Brianna, who turns 3 in May, could follow - long after her mother was gone.

. . . Being in the hospital makes me realize how lucky I am! My daughter is the best . . . I miss her little face lightening up the morning . . . I miss her so much it hurts.

Last summer, McDonald recorded a 20-minute video about the reality of living with cystic fibrosis, a genetic disorder that damages the lungs and digestive system. The video grew out of her experience being a cystic fibrosis patient in a maternity unit at Long Island Jewish Medical Center.

The hospital invited McDonald and her father, Brian, in. And working together, they began to teach the medical staff about cystic fibrosis, about patients, and about their families. Their work helped change how the hospital system deals with cystic fibrosis patients, no matter what section of the hospital they are in.

"North Shore-LIJ understood that healing the patient was also healing the family," said McDonald's father, Brian. "It is an exceptional place."

Dr. Fatima Jaffrey, who worked with the McDonalds and who appears in the video with them, said, "She was an incredible, amazing young woman and an effective advocate. Christina became the face of cystic fibrosis here."

McDonald had plenty of help in her work, and in her life, from her close-knit family. Her father gave up his businesses to become a paramedic after she and later her brother Bobby, now 18, were diagnosed with the disorder. And from her fiance, Kenny Collotta, who became an EMT after their whirlwind courtship so that he could help her.

"I saw her one night at a bar in Huntington, but I was so shy I didn't say anything," Collotta remembered. He was so smitten that he returned to the same bar on New Year's Eve, hoping that she would walk in.

McDonald didn't. But the next morning, he received a message from her on MySpace, along with an apology. "I've been looking for you for three weeks," she would tell Collotta later. "But I thought your name was Andy."

My [fiance] is the most amazing man in the world. Today, when he walked into the hospital, I got butterflies. . . . My father is superman. . . . My mother is my rock . . .

Through these writings, McDonald lives on. And in the multiple memory boxes she made for the couple's daughter.

And in the work she did, teaching the medical staff at North Shore-Long Island Jewish Health System about cystic fibrosis. In the lives of her "Cysters," a group of close friends with cystic fibrosis. In the hearts of other cystic fibrosis patients from around the world, who left messages on her Facebook page after learning of her death.

And in the efforts of her family, who intends to keep on working to ensure that the medical community understands cystic fibrosis. They've created a website, christinamariemcdonald.com, in her memory.

My friends are amazing . . . the support and kind words keep me going. . . . There is more . . . but I need to rest. . . . Those are the most important things in my life. That I am soooooooo grateful for.

What is cystic fibrosis

Cystic fibrosis is a genetic disorder that produces thick mucus that clogs several organs, including the lungs, pancreas and digestive system. About 30,000 children and adults in the United States have cystic fibrosis. There is no cure.

• Some 10 million people carry the defective gene but do not have the disease.
   
• The disease makes breathing difficult because patients can't cough out the mucus. It also can cause serious infections that lead to lung damage and cause blockages in the digestive system.
   
• Symptoms include shortness of breath, chronic coughing and poor growth and weight gain. The average life expectancy for patients is up to 37 years old.
   
• Testing includes sweat and blood tests. Treatment includes multiple medications - or, in some cases, a vibrating vest on the abdomen - aimed at helping loosen thick mucus. Some patients eventually have lung transplants.

-- Ron Mitchell

SOURCE: Cystic Fibrosis Foundation

Cystic Fibrosis from Alan Ginsberg on Vimeo.