Family legacy: Cystic fibrosis

Mother raises awareness of deadly genetic disease that suffocates lungs, pancreas and sweat glands

BY GAYLA SCHAEFER
FOR FLORIDA TODAY

When 37-year-old Steve Blake celebrated his graduation with a teaching degree from the University of Central Florida on May 5, his family cheered him as he embarked on his new career.

His wife, 30-year-old Nakeya, also is embarking on a new life path. However, it is not one she would have chosen.

"When I was pregnant with my fourth child, the obstetrician ran some genetic tests, and discovered my husband and I are both carriers of cystic fibrosis, and our children were at high risk," she explained. "Not knowing what CF was, I went online immediately and looked it up."

What Nakeya Blake found was a perfect description of the ailments her second child, 4-year-old Kraig, had been suffering from, undiagnosed, since birth.

"After Kadyn was born, we learned she has the disease, as well," Blake said. "At first, my husband was in denial. But I took it as a sign. God never gives you more than you can handle, so I decided now that I had two children with CF, I needed to take action and try to do something to help."

The Blakes had struggled for years with misdiagnoses and treatment for other diagnosed disorders that never helped their son, Kraig.

Blake decided to try to increase awareness, so no other parent would have to suffer in ignorance the way she did. "I got involved with the local chapter of the Cystic Fibrosis Foundation, and I am trying to spread the word any way I can," Blake said.

Cystic fibrosis is a life-threatening genetic disease affecting 30,000 people in the United States. The disease causes mucus to build up and clog some of the organs in the body, particularly the lungs, pancreas and sweat glands.

When mucus clogs the lungs, it makes breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage.

Mucus also can block the digestive tract and pancreas, and stop digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help the body grow and stay healthy.

Battle to the end

"My oldest son, Jeff, had both the lung and pancreas types of CF," said Brevard County Commissioner Helen Voltz, honorary chairwoman of the Cystic Fibrosis Foundation "Great Strides" 2007 Melbourne walk. "It took six months to diagnose. It was a battle for years and years. When he was 15 or 16, he was really tiny, his teeth had been discolored, he coughed a lot, and kids made fun of him. He would come home crying. Kids don't understand how they affect other kids when they treat them like that."

At age 16, her son started drinking.

"He just gave up on life, and, at one point was told by a doctor in Gainesville that he would not be considered for a double-lung transplant because he had not taken care of himself," Voltz said. "He finally got it, and was a good kid at the end, but, by that time, the damage was done."

Voltz's son died one week after his 19th birthday -- 17 years ago.

While she believes her second son, Kevin, may have carried the gene, he was not tested before being killed in a car accident a few years after his brother died.

"You just have to be strong, and have a lot of faith, because I think it was like 70 percent of families with kids with CF end up getting divorced, because you blame each other, since both parents have to be carriers to pass the disease on. It is a lot of work to take care of these kids," she said.

Rallying support

Voltz noted that, while she never worked when her kids were young, she would not have been able to work anyway, because of the intensity of care needed.

The same is still true more than 30 years later for Nakeya Blake, who had to quit her job to provide full-time care for her children.

Blake also decided to focus her efforts on increasing CF awareness because of the treatment her family receives from others.

"Because of the CF, they are always coughing and have runny noses, and when we go out, I get a lot of looks from other parents at the park or store like, 'Why did you bring your sick kid out?' " Blake said. "I have even had ladies move away from us at church, because they didn't want to catch something. People don't realize they are more of a threat to my children than my kids are to them."

Making matters worse, Blake has not been able to find support groups locally for parents of children with physical disabilities and diseases such as hers, And she said children with CF are supposed to try to stay away from others with the disease when possible to avoid cross-contamination of whatever germs they have picked up, since they have reduced immune systems.

"There really needs to be a group of parents helping parents," Voltz said. "These young parents need to know what to expect. It is scary not to know what is going to happen."

As her first step toward increasing understanding, Blake and her family are participating with Voltz in the Space Coast's "Great Strides: Taking Steps to Cure Cystic Fibrosis" fundraising walks this month. She also hopes to be featured on national programs such as "The Oprah Winfrey Show."

"We need a national spokesperson to do for CF what Michael J. Fox did for Parkinson's," she said. "Until we find one, I am going to do whatever I can."

Walking for a cure

Participants in the four "Great Strides" walks on the Space Coast will raise funds for critical cystic fibrosis research, education and care programs.

Walks in Saturday in Palm Bay and Vero Beach, and upcoming walks are scheduled in Melbourne and Cocoa Beach.

"Thanks to 'Great Strides,' we are making tremendous progress in fighting this disease, and we are grateful for our volunteers and sponsors who are a crucial part of this effort," said Jolie Patricia Sester, executive director of the Cystic Fibrosis Foundation's Space Coast Office.

'Great Strides,' in its 19th year, is one of the largest fundraisers of its kind in the country, and organizers hope to raise $36 million nationwide this year. Tens of thousands of walkers are expected to turn out at 550 walk sites across the country.

More than 10 million Americans are symptomless carriers of the CF gene.

With the support of the CF Foundation, there have been significant advances in cystic fibrosis research and care, bringing the median survival age up from the early-childhood years in the '50s to almost 37 today.

"My husband is more of a softie than I am, and it is very upsetting for him, realizing that he is 37, and that some kids with CF don't even make it out of childhood," Blake said. "A lot can change in 30 years, but I pray to God there will be a cure, and that it will be sooner than later."