Mom of tot with CF hopes to make ‘Great Strides’ against the disease

When a routine blood test was performed on Jennifer Tower’s newborn daughter, Sonya, the words “cystic fibrosis” had never even entered into the new mother’s mind. Neither Jennifer, a music teacher at the Luce Elementary School in Canton, nor her husband, Steve, was aware that they were carriers of the recessive genetic disease.

Jennifer and Steve Tower with their daughter, Sonya

Sonya’s blood, however, tested positive for indicators of the disorder, requiring Jennifer and Steve to submit their daughter to further genetic testing. The test revealed two mutated genes. Sonya was then taken to Children’s Hospital, where a team of doctors there performed a “sweat test.” The chloride levels in the infant’s sweat were the final confirmation. Sonya, just 10 days old, was diagnosed with cystic fibrosis.

“Of course, we were shocked,” Jennifer said. “There was no history of CF in either of our families, and neither of us knew we were carriers. Your first inclination is to google the disease, and of course, there is a lot of bad news on the internet, so it was extremely hard.”

After her internet scare, Jennifer and Steve soon received some much needed assurance from a team of doctors during a six-hour meeting at Children’s Hospital.

“It was a really tough meeting, but we got a lot of support from the doctors,” Jennifer said. “They told us it’s looking good for kids with CF these days.”

Cystic fibrosis refers to the characteristic scarring (fibrosis) and cyst formation within the pancreas. Difficulty breathing is the most serious symptom and results from frequent lung infections that are treated with, though not cured by, antibiotics and other medications. A multitude of other symptoms, including sinus infections, poor growth, diarrhea, and infertility can result from the effects of CF on other parts of the body.

There are myriad challenges that face newborns with cystic fibrosis, including the buildup of mucus and susceptibility to infection. While there have been many advancements in CF medicine, such as vest therapy (to loosen mucus) and new antibiotics to decrease mucus buildup, the therapy can be very time intensive and arduous.

“The treatments are very time consuming for Sonya — up to two or three hours a day,” said Jennifer. “We have to be very careful about [exposing her to] germs as well, but I think that the time commitment will be the toughest factor as she grows up.”

While many would be discouraged by such a daunting task, Jennifer has used the obstacles brought on by Sonya’s diagnosis as motivation rather than a hindrance. After doing research about the disease and looking over the information given out at Children’s Hospital, Jennifer decided to take an active role in the “Great Strides Walk,” the largest cystic fibrosis fundraiser in Massachusetts.

Great Strides, organized by the Cystic Fibrosis Foundation, or CFF, has already raised over $9,000 for cystic fibrosis research, well on their way to the stated goal of $15,000. Out of that total, Jennifer is personally responsible for raising a staggering $2,286.

With several promising medications aimed to help cure basic defects in the trial and research stages, raising funds for CF is an essential measure to ensure a healthy future for children like Sonya.

“CF is considered a rare disease, so the drug companies don’t want to spend money on researching a cure, therefore most of the research is done by the CFF,” Jennifer explained.

The Great Strides Walk will take place in Dedham on May 22. Those interested in joining the walk can go to the CFF page online and search “Great Strides,” or log on to www.cff.org/great_strides/jennifertower to make a donation in Sonya’s name.

With more people taking an active role in CF research and advancement, Jennifer is hopeful that the great health currently enjoyed by her daughter doesn’t have to change.

“We are really happy with how Sonya’s health has been,” she said. “We don’t know if her CF is mild or severe at this point, which is something we will learn as she grows up, but we have been thrilled with her health so far.”

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Posted by Danny Joseph on Apr 8 2011. Filed under Features. Both comments and pings are currently closed.