Kindergartner Walks for Cystic Fibrosis

By Becky Herberger | Published May 16, 2014 | The Bolton Independent

Nathan Thornberry, a kindergartner at Florence Sawyer School, will walk this Sunday to raise awareness for Cystic Fibrosis — a disease that he has. Devon Thornberry, Nathan’s mom, hopes to gain support from as many people as possible.
On May 18, Nathan will take part in the Great Strides Walk in Boston, the Cystic Fibrosis Foundation’s largest national fundraising event.  This is the first year that Nathan is well enough to participate, and Devon is encouraging as many people as possible to walk with him. “I’m excited to walk with my friends,” said Nathan. 
Devon created Nathan’s League not only to raise awareness and funds for CF, but also to involve and rally around her son.  People with CF can’t be anywhere near each other indoors because they risk transferring infections, so Devon saw the outdoor walk as a good opportunity to involve Nathan.  Devon explained, “[Nathan’s] doctors have said, as long as he doesn’t have any active infections and he keeps a distance of six feet from anybody that has [CF], that it’s okay.”
CF is a genetic disease that affects the lungs and digestive tracts of about 30,000 Americans.  A person’s lungs should have very fluid secretions, but mucus is much thicker for people with CF.  Devon explained that lung infections occur because “bacteria gets in there and it can’t get out, and then it just feeds… the medications can’t get into all the pockets of the lungs.” Fluid is also thick in the pancreas, stopping the breakdown of food, and as it moves into the intestines, Devon said, “It’s just stuck — it’s like glue in there.”  There is currently no cure for the disease.
Nathan is a triplet and, according to Devon, is the boss of his two brothers.   He is very creative, loves to make crafts and do things with his hands, plays sports and moves quickly from one activity to the next.  At 6 years old, Nathan manages his disease every day, handling most of it by himself.  Devon said, “With everything, [Nathan] just goes with the flow.”
Nathan takes a nebulizer twice a day to help break up the mucus in his lungs and wears a compression vest three times a day in attempt to clear some of the mucus out.  With every piece of food Nathan eats, he takes artificial enzymes that aid in digestion.  All night long he has a feeding tube that supplies 90 percent of his nutrition because his stomach does not work.  If he has a bacterial infection, he takes antibiotics.  He also takes acid blockers twice a day for bad reflux, an antihistamine with a side effect that aids in emptying the stomach, Miralax for constipation, and the list goes on.
“I never want to be that doom-and-gloom person about it,” explained Devon, “but a lot of people, when they seem me giving [Nathan] medicine, they think he is going to get better, and, the way it goes, this is the best part of his life, unfortunately.  Things are going to get harder as he gets sick more.  He’s going to be doing these treatments for the rest of his life… It’s going to be a constant struggle.”  
Devon said there has been a lot of progress with the disease over the last few years.  She shared examples of research into treatments for different mutations, time-release enzymes, drugs that are targeting the cellular wall, lung transplants, and more.  “There are all these different paths that you can take in helping kids with CF,” said Devon, “but they need more money to do that research.” 
 The CF Foundation is the driving force behind these advances.  According to its website, “The CF Foundation is the world’s leader in the search for a cure for CF.  [They]  fund more CF research than any other organization, and nearly every CF drug available was made possible because of Foundation support.”  
Nathan’s League has raised $2,000 for the CF Foundation and is working toward a goal of $3,000.  “If people keep donating money to the CF Foundation,” said Devon, ” they can keep pushing these new treatments.  It may get to a point where maybe [Nathan] doesn’t have to do a nebulizer every day.  That would be wonderful.”  
 Nathan and about 20 friends will participate in the Great Strides Walk and hope that more people will join them.  “I just want him to know that he always will have support and that there are always going to be people there that understand that things are hard for him.” 
To sign up to walk with Nathan this Sunday, or donate, or both, visit Nathan’s League at http://tinyurl.com/msze2mo.  To learn more about the Great Strides Walk, go to http://fightcf.cff.org and for information on CF, go to http://cff.org.