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Crippling disease doesn't diminish parents' optimism

By Tara Drach

It doesn’t get the high-profile treatment of some diseases, nor does it affect as many Valley children. That doesn’t mean, however, that cystic fibrosis is any less traumatic for its young victims or less worrisome for their parents.

“My son has been in the hospital six times since birth,” says Kyrene Corridor resident Patty Acedo, whose three-year-old son Vincent is one of an estimated 30,000 U.S. adults and children (200 Valleywide) who live with CF.

“He has seen more needles and IVs than most people will see in their lifetime.”

The number one genetic killer of children, CF occurs when a defective gene causes the body to produce an abnormally thick, sticky mucus. This leads to chronic and life-threatening lung infections and impaired digestion.

“On a good day, when he is 100 percent healthy, he has to take medicine 18 times a day,” said Acedo. The medicine, enzymes that help the body absorb fat, must be taken every time Vincent eats a meal or a snack.

“Otherwise, everything runs right through him and he receives no nutrition,” said Acedo. 

One in 31 Americans, (one in 28 Caucasians), more than 10 million people, are symptom-less carriers of the defective gene, according to statistics from the national Cystic Fibrosis Foundation.

An individual must inherit the gene from both parents to have cystic fibrosis.

“My husband and I both have the recessive CF gene that made Vincent positive,” said Acedo.

Unfortunately, says Acedo, neither she nor her husband were aware of the risk when Vincent was conceived. It is not standard practice to test for the defective gene.

“Even if we would have known we were carriers we would not have done anything about it,” said Acedo.

“We would have just liked to have been more prepared.”      

Despite being hospitalized six times since his birth, Vincent is a considerably healthy child with cystic fibrosis, according to his mother.

“A lot of the other CF kids we see are much smaller and not as strong and healthy. We are lucky that we’ve known since he was two days old that Vincent had CF. That way we could be proactive in his care, not reactive like most people have to be.”

The majority of children with CF are not diagnosed until they are five to six years old and a series of tests are done to determine that they have the disease.

On a typical day, Vincent receives a breathing treatment, in which he wears a vest and a mask, to help break up mucus and open his lungs.

Throughout the day, he takes enzymes, a salt mixture to help with dehydration, vitamin supplements, Claritin to combat infection caused by mucus drainage and Zantac and laxatives to aid in digestion.

In January, Vincent was hospitalized because mucus clogged his intestines. With the love and support of family and friends, including the Arizona chapter of Mothers and More whose members brought the Acedo’s dinner every night they were in the hospital, Vincent is home again and on his way to recovery. 

However, cystic fibrosis is something he will live with until a cure is found.   

Since the defective gene was discovered in 1989, the race for a cure has accelerated. The Cystic Fibrosis Foundation, established in 1955, raises funds for research to assure the cure and means of control of CF.

On April 27, the group’s Arizona chapter will host the 14^th annual “Great Strides” walkathon at the Phoenix Zoo.

Proceeds will go to finding a cure. Prizes, donated by sponsors such as American Airlines and Target, will be awarded to walkers with the most pledges. Other walks are taking place in April and May throughout Arizona.  

Information: (602) 224-0068.

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