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 Every day is a struggle for 4-year-old Lauren Black of Linfield. Yet in the midst of her own battle, the tiny youngster and her family raised nearly $40,000 to help others with the same condition.
Shortly after birth, thanks to Pennsylvania’s newborn screenings, Lauren was diagnosed with cystic fibrosis. Her parents, Colin and Ann Black, “had no idea we were carriers of the CF gene,” Colin said. “Nobody in either of our families has ever had CF.”
Cystic fibrosis is a degenerative lung and digestive disease affecting more than 30,000 Americans. The disease gets progressively worse until the lungs fail, Black explained. There currently is no cure.
Basically, CF causes the body to produce abnormally thick, sticky mucus. This mucus clogs the organs in the body, causing them to not work properly. The three main organs affected are the pancreas, lungs and liver.
The pancreas normally secretes enzymes to help break down food when it is eaten. In people with CF, the enzymes are blocked by the mucus. Most people with CF need to take enzyme pills when they eat so their body can absorb nutrients from food, Black explained. Lauren takes more than 25 enzyme pills every day.
According to Black, about 90 percent of the people with CF will eventually succumb to the disease due to complications associated with their lungs. The thick mucus clogs the lungs and “makes it a perfect place for bacteria to grow,” he noted. “These bacteria and the body’s own white blood cells slowly destroy the lungs.”
Since Lauren’s body cannot clear the mucus from her lungs naturally, she must have chest physical therapy at least twice a day to get the mucus out, her father explained. To do this, she inhales medications through a nebulizer to open up the airways and loosen the mucus. She then receives percussion therapy. This can be done by physically clapping on her chest and back, or by wearing a vest that shakes her to loosen the mucus.
“Lauren fights every day to stay healthy,” Black said. She will continue to have at least two chest therapies every day for the rest of her life. So far, she has spent over 1500 hours, more than 63 days, of her life working to keep her lungs clear. “Lauren never gets a break from the disease,” he noted.
Yet even with her disease, Lauren manages to do many of the things any other 4-year-old would. She attended Episcopal Nursery School in Royersford two days a week this year. When the time comes, she will be able to go to school, her dad said. However, depending on how the disease progresses, she may need accommodations. For example, he explained, right now she gets all her food by way of a feeding tube. “This will probably be the case by the time she’s ready to go to school full time,” he noted.
But Lauren “loves school, riding her bike, being outside, playing soccer and running around.” Her family also includes her sister Katherine and the family dog, Jake. The family has lived in Linfield for a little over 10 years.
Lauren’s disease has had a tremendous impact on her family. “We have to make sure she has her two hour therapies every day, so you plan your daily schedule around that first,” her dad explained.
“Second are her feedings. Since she has a feeding tube we need to take her food, pump, bag, adapter and some other stuff with us if we aren’t going to be home at mealtime. She also has to take enzymes with every meal because the thick mucus caused by the CF blocks her pancreas,” he continued.
“We never just go out the door,” Black remarked. “We always need to figure out how to fit everything in.”
“Lauren fights every day to stay healthy,” Black commented. “People with CF never get a break. They are always planning their life around fighting this disease.”
The Black family isn’t taking CF lying down, however. They recently participated in two major fundraisers to raise money to find a cure. They joined in the Cystic Fibrosis Foundation’s Great Strides walk in the Lower Perkiomen Valley Park in May. The Blacks raised just over $20,000 for the walk.
The family also sponsored the second annual 65 Roses Sports Gala in Lauren’s honor at the Lakeside Inn, Limerick. (65 Roses is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce, Black explained.)
The event featured a live and silent auction, along with a great dinner. Special guests included former Eagle Frank LeMaster, former Penn State and Eagles wide receiver Kenny Jackson, former heavyweight world champion Tim Witherspoon, world-renowned boxing trainer Aaron Snowell and former Penn State and New York Jets running back Blair Thomas.
About 200 people attended the gala, and the two events combined raised about $40,000 for the Cystic Fibrosis Foundation. The main sponsor of the gala was Duke Fleig of Intercounty Mortgage. “He is the main sponsor and the one who keeps this going,” Black said. “Without him there wouldn’t be a gala. He has been a great support for us.”
The Blacks are already planning the third annual Sports Gala for next year, probably in March 2008.
“What exactly the future holds for Lauren we don’t know,” Black said. “This disease progresses differently in everybody. This is why we are asking you to support the CFF so that one day, hopefully soon, CF will no longer stand for cystic fibrosis. It will stand for Cure Found, and Lauren, and thousands like her, will get a break from this disease.”
Black noted that if people would like to help they can go to www.albertlandscaping.com. There is a link there to donate online and link to Lauren’s video.
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