Photo By Theanne Tangen | South Dakota Army National Guard soldier Maj. Kevin Huxford runs with his two boys,...... read more read more
RAPID CITY, S.D. -For one South Dakota Army National Guard soldier running has become more than a measure of his physical fitness; it has become his weapon against a disease that is affecting his children. Maj. Kevin Huxford runs to raise awareness of cystic fibrosis and to combat the illness with hopes of helping to find a cure.
Kevin and his wife, Caren, began their journey with cystic fibrosis nine years ago when their first son Caleb was born. A year later, their second son, Logan, was born and diagnosed as well.
This deadly, genetic disease causes the body to produce abnormally thick, sticky mucus that clogs the airways leading to chronic, life-threatening lung infections. These thick secretions also obstruct the pancreas, causing inadequate digestion.
Approximately 30,000 people in the United States have been diagnosed with cystic fibrosis, with about 1,000 new cases each year.
“Because such a small percentage of the United States is diagnosed with CF it is considered an orphan disease, making money and research limited,” said Kevin, of Rapid City, S.D.
These limitations are what created “Team Huxford.” Kevin, Caren, their four children, Caleb, 9, Logan, 8, Cybil, 3, and Lenox, 2, along with other family and friends make up Team Huxford, who have raised more than $80,000 for the Cystic Fibrosis Foundation by hosting a Great Strides 10k run/walk for the past six years.
“When we moved to Rapid City we were introduced to five other families dealing with cystic fibrosis and decided that we should do a Great Strides here,” said Kevin, a Great Strides participant prior to moving to the Black Hills in 2003. “South Dakota currently has approximately 100 individuals with CF and 12 of them, including Caleb and Logan, live in the Black Hills area.”
Team Huxford is doing more than the Great Strides event, they are raising awareness and money to the point where the CF National Headquarters hired a full-time employee to oversee the volunteers and fundraising events for both North and South Dakota.
A member of Team Huxford, Kevin’s co-worker and fellow Soldier Sgt. Maj. Todd Grabow, recently raised money by running his first 100k (62.9 miles) at the Black Hills 100 in honor of Caleb and Logan.
“I asked for donations to help support their foundation,” said Grabow. “A nickel a mile or a dime a mile; every bit helps.”
Grabow said he was completely ignorant of the disease until he sat down and talked with Kevin.
Every day, twice a day, Kevin’s boys do 45 minutes of breathing treatments. The treatment includes inhaling nebulized medication and then they use a Vest airway clearance system to dislodge mucus from their lungs. They also take special enzyme medication with each meal and snack to aid in digestion and to help gain and maintain weight.
Kevin said the treatments are behind the scenes and no one really knows the boys are taking medication because they look and act like any other kid.
“The boys know they are different from their friends because they have to take medication,” he said. “They’re actually shy about it and hide their treatments from their peers. It is unfortunate that two of my kids have CF, but it is fortunate that they have each other and know that they are not doing this alone. They have a support system within and they can rely on each other.”
Even with the demanding needs of treatment, Caleb manages to wake up at 5:45 a.m. during the school year to go for a two-mile run.
“Caleb is so driven for a nine-year-old,” Kevin said. “His New Year’s resolution was to run 100 miles and I believe he has already passed that goal.”
Listening to what Kevin and his family go through on a daily basis is what gave Grabow the desire to help.
“What is amazing to me is that Caleb runs with a much smaller lung capacity than the average person,” said Grabow. “What really struck me to my core is that the average life expectancy for someone with CF is their late 30s. But what touched me the most is that his boys, especially his nine-year-old, are avid runners.”
Grabow said the 100k was challenging and thanked Team Huxford for bringing some meaning to the race.
“It is probably the only thing that gave me the extra push to the finish line,” he said. “I know the money raised will help buy some days, weeks, months, or years for anyone dealing with this disease.”
Cystic Fibrosis Foundation, Senior Development Director Patrick Kirby said the dollars and support are paying off.
“On January 31, the first drug ever to target the underlying cause of cystic fibrosis was approved by the FDA. Kalydeco (VX-770) has been noted as a major advancement in the search for a cure for cystic fibrosis,” said Kirby.
Kevin said the new pill only targets four percent of the CF population. The medication tricks genes into not producing mucus leading to the first CF patient to be removed from the lung donor list.
“Although this new treatment will not benefit Caleb and Logan, the drug is raising new hope for those, like our children,” said Kevin. “We know the science behind this new drug soon will be used to develop treatments for all those living with cystic fibrosis.”
The next strain they are going to work on is the one Caleb and Logan have, and the most common among CF patients, the Delta F508 gene, said Kevin.
“They are getting so close to finding a cure,” he said. “All they need is time and the money to do more research. Ninety cents of every dollar that goes toward the Cystic Fibrosis Foundation is donated to research. If they can cure one strain, I am hopeful they will find a cure for my boys.”
To get involved with Team Huxford or attend the Black Hills Great Strides 10k run/walk held annually during Memorial Day weekend at the old Storybook Island Park in Rapid City, please visit the website at www.cff.org/Great_Strides/TeamHuxford. Participants can donate time, money or take part in the 10k run/walk event.
| Date Taken: | 07.12.2012 |
| Date Posted: | 07.12.2012 17:17 |
| Story ID: | 91449 |
| Location: | RAPID CITY, SOUTH DAKOTA, US |
| Web Views: | 292 |
| Downloads: | 0 |
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