He’s a little small for his age, but he hit a growth spurt this past year. Periods of rapid growth are typical for a 15 year old, but, Will Hammond can’t help but wonder if his growth was aided by a new treatment for cystic fibrosis.
He’d just finished soccer practice recently when he entered his father’s office for an interview.
As expected, his uniform was dirty, but that didn’t seem to bother him as he sat down in a chair next to his mother and ate from a big bag of potato chips in between a couple of ice cream treats.
Will is in the ninth-grade at Cleveland High School, where he plays on the varsity reserve soccer team. He plays trumpet in the band, an instrument he has played since the sixth grade.
Academically, he competes on the Science Olympiad team, which recently won the regional title and will vie for the state title in April. He is also a member of the Student Government Association.
If he had to eliminate activities, “I think the last thing would be soccer,” Will said. “I like soccer the best, probably because I’ve been playing since I was about 5. I also like Science Olympiad and SGA.”
Though Will enjoys music and singing, band would probably be the first thing to go. In his spare time, he sings in the church choir and teen ensemble, which is a departure from last year when he was in the church orchestra.
Will leads an active life — a life his parents, Dr. Jerome and Vanessa Hammond, were afraid he would never have because their son was diagnosed with cystic fibrosis at 8 months of age. His twin brother, Graham, does not have the disease.
Will is one of the 4 percent of CF patients with the G551D mutation who qualified to take Kalydeco, a new drug that came out in January 2012. All signs of the disease have disappeared since he began taking the medicine in March 2012.
Kalydeco treats the root cause of cystic fibrosis, instead of the symptoms. So far, he still has to take all the same treatments as before, with the exception of an antibiotic to prevent bacteria in the lung. A small, persistent cough has disappeared, but he still has to do the treatments.
Vanessa said Will has always had good lung function and been healthy, mainly because he has always been active. Research has discovered that exercise and diet are essential to good health in CF patients.
So what has changed for Will in the past 12 months?
“In practical terms, not much,” she said. “But what it feels like is, when your child has CF, it’s like they’re on a down escalator. Some move faster than others, some are longer than others. He was doing pretty well, but still you know he was stuck on this escalator, that the trajectory, eventually for most people is down in terms of their health.
“They’re stuck on that escalator, so what you’re trying to do is slow it down and not think about where the escalator is headed. But, there is this inevitable feeling — even if you have faith that everything is going to be OK — which we do, and did — there’s still this feeling your child is stuck on this down escalator and can’t get off.
“But with this medicine, wherever Will was on this escalator, he gets to step off.”
Cystic fibrosis affects about 30,000 people in the United States. The number of living CF patients is small compared to cancer and heart disease. But, part of the reason CF is not so widespread is because the life expectancy of a CF patient is 37 years.
A defective gene causes CF. The gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
“Even before I was 1, I had been doing treatments and medicine. It is something that is normal for me,” he said. “I don’t think I ever thought about it until preschool and kindergarten — I don’t really know anyone else with cystic fibrosis as in really know who they are — I might hear of people, but I never got to talk to anyone with cystic fibrosis so I kind of felt like I was just the one Cleveland.”
The 20-minute breathing treatments at morning and night are just part of life.
“My mom — my goodness — she basically gets all the medicine for me, reminds me to do this, this and this. I do a lot on my own now, but earlier, like in elementary school, it was just all listen to my mom and that’s what I would do,” he said. “If she didn’t remind me, I’d totally forget and not do my treatments.”
It wasn’t because he was resistant to taking the medicine, his father interjected. “It was just that mom was the schedule keeper.”
“It gets annoying sometime, but I’ve been doing it basically all my life, so it’s normal and doesn’t really bother me,” Will said.
The disease has in a sense, been woven into the fabric of the family. When Will has treatments, twin brother Graham cannot go outside and play and when they go on a family trip, the equipment goes with them, even to China.
“When Graham was little, he wanted to try on the vest and other cousins, when they came over, they wanted to wear this machine and feel the treatment,” Jerome said.
“As these things happen, it feels like this is how it works: In the morning you get up and it’s like, ‘Will, hurry up. You’ve got to do treatment and we’ve only got 40 minutes to get out the door’ and so forth.”
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF.
Many people with the disease can now expect to live into their 30s, 40s and beyond, according to information at www.cff.org.
Great Strides events benefitting research to find a cure for all CF patients are scheduled for Saturday, April 13, on the Lee University campus. Registration will get under way at 7 a.m. in front of the Lee University Student Union. The 5K (3.1 miles) road race is slated for an 8:30 a.m. start, and the walk will begin at 10 a.m.
The route commences on the Lee campus and goes through downtown Cleveland and the historic Ocoee Street area. Additional information and online registration are available at the local event website at www.leeuniversity.edu/greatstrides, or by contacting Cleveland walk coordinator Rosie Adams in the Office of Student Development at 614-8406.