Cherishing the moments: Local family brings awareness about cystic fibrosis
Published 7:00 am Wednesday, May 27, 2015
When people meet 4-year-old Charlotte Hall, they see what appears to be a vibrant, blonde-haired toddler who is full of energy.
However, what most people don’t realize is that Charlotte suffers from a life-threatening disease known as cystic fibrosis.
Charlotte is the daughter of Amanda and Harvey, who moved to Poplarville about five months ago.
“The people are real nice here,” Harvey said. “ They also have a good school system. It’s a tight knit community. If you need help, there’s someone there to help you.”
The pair met in 2005 in Pascagoula and married in 2008. Both said they always wanted children.
Their first daughter Kaitlyn is now 6-years-old.
Four years ago, Amanda gave birth to Charlotte. During the first three days of her life, Charlotte did not have a bowel movement, which prompted the Halls to take her back to the hospital, where she was diagnosed with meconium ileus, a condition where mucus creates a blockage in the intestines, Amanda said.
It was during her pediatric five-day check-up that the Halls were given the news that would change their lives forever; their daughter had cystic fibrosis.
“It felt like we had the wind knocked out of us and we hit the floor,” Harvey said.
The Halls brought their newborn to Jackson, where she was hospitalized for two weeks. During that visit, the young parents learned about cystic fibrosis and how to care for Charlotte.
According to the cystic fibrosis foundation’s website, it is a genetic disease that predominantly affects a patient’s lungs and digestive system. The body produces unusually thick, sticky mucus that clogs the lungs, obstructs the pancreas and blocks natural enzymes that help the body break down food and absorb vital nutrients.
Harvey said Charlotte has a Double Delta F508 mutation, leading her to develop CF. While CF is inherited, until now no one in his or her family has ever had CF.
“We weren’t given a prognosis at the time, but doctors told us to live every day as normal as possible,” Harvey said.
When Charlotte was a year old, a feeding tube was inserted into her stomach to provide her with the nutrition she needs.
During the school year, Charlotte’s day begins at 5 a.m., when she checks her blood sugar levels, because she also suffers from CF related diabetes, Amanda said.
After the blood test, Charlotte wears a vest for about 30 minutes, which removes mucus from her lungs. She is also administered a breathing treatment through a nebulizer.
When the daily morning routine has concluded, Charlotte is ready to attend preschool.
Once she gets home from school, Charlotte undergoes another breathing treatment and checks her sugar levels once more before dinner. She also takes an enzyme before meals to help with digestion.
About 30 minutes prior to bedtime, Charlotte once again dons her vest and nebulizer. During the day, she eats food by mouth, but at night, the Charlotte is hooked up to a pump, where she receives nutrients through the feeding tube in her stomach.
During an illness, Amanda said her daughter wears her vest and nebulizer four times a day. The Halls can usually expect at least two weeklong hospital stays a year, especially during the winter months.
Harvey and Amanda said their daughter doesn’t realize she’s sick.
“I think she’s aware, but I don’t think she realizes that no one does what she does,” Amanda said. “She can even check her own sugar levels.”
Although Charlotte’s disease keeps the family grounded, Amanda said they don’t keep her in a bubble. She attends preschool, church and visits the park often.
“We don’t want to keep her confined,” Harvey said. “If something happened to her, I don’t want to think I held her back. We are cautious but not too overprotective.”
Amanda said Charlotte has a lot of spirit regardless of what she endures.
“She doesn’t even allow a hospital visit to get her down,” Amanda said. “A ‘normal’ life expectancy is about 30-years, but about half live to be that age.”
Harvey said he would love to see his daughter graduate high school, get married someday and have a good life.
“It’s hard knowing your child is sick and there’s nothing you can do but love her every day and appreciate the time we have with her,” Harvey said.
At a recent Poplarville Board of Aldermen meeting, Amanda presented the mayor with a proclamation to declare May as Cystic Fibrosis Awareness Month in the city.
The Halls are active participants in the CF Foundation and have plans to host events in the future. For now, CF posters can be purchased at The Coffee Shop and Dimples Fried Chicken in Poplarville.
“We’ve gotten a lot of community support,” Amanda said. “The CF Foundation relies on donations to fund research. Nobody’s promised tomorrow, but our days with her are limited in the life we live.”