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“That has been my creed,” Ms. Morelli said. “We do it all, as much as we can.”
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States and 70,000 worldwide. A defective 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.
Kaci Conley, 10, and Jared Conley, 9, both students at Jefferson Elementary, were kept at home when they were infants, but now that they’re older, their mother’s goal is for them not to feel self conscious because of the disorder.
Kaci was born in 1997 and was 19 months old when Jared was born. He had a colon obstruction that required surgery. After the surgery, the surgeon told the family the problem was indicative of cystic fibrosis. A test confirmed that both children had the defective gene.
Neither of the parents knew anything about cystic fibrosis, Ms. Morelli said.
Kaci had exhibited some symptoms - she was always hungry - however, the parents did not recognize it as characteristic of the disease.
“She had a huge appetite because she wasn’t absorbing the nutrients from the food,” Ms. Morelli said.
Ms. Morelli said she found the thought of her children not getting enough nutrients more troubling than the coughing and lung issues common to the disorder.
In the last few years, there have been advances in treatments of cystic fibrosis with inhaled antibiotics and hypertonic saline therapy, which uses a mist to deliver salt and water to the lungs to clear mucus.
Advances in gene therapy are also being watched closely by the cystic fibrosis community, she said.
Both children have gastric bypass tubes and that probably poses the greatest challenge, Ms. Morelli said.
“Jared wants to play sports, but we have to limit contact sports,” she said. “Tennis and swimming are pretty good options for him and Kaci really likes gymnastics.”
While Jared and Kaci know they’re different, Ms. Morelli said, they’ve been exposed to children who have profound disabilities and realize there are others with many more problems.
As they get older and learn more about the mortality rates of the disease, Jared and Kaci will probably have additional issues, she said.
In 2006, the predicted median age of survival for someone with cystic fibrosis was 37 years, according to the Cystic Fibrosis Foundation.
“I’m open to counseling or whatever they might need,” she said.
Jared and Kaci receive disability payments from Social Security and are on Medicaid.
Because they receive government assistance, Ms. Morelli is limited in what she can earn and can’t have assets of more than $3,000 until her children reach age 18, which makes it impossible for her to have any retirement savings.
“There are definite sacrifices … but they’re my kids,” she said.
In Ms. Morelli’s job at First Christian Church Preschool there are people who will cover for her if either of the children have to be hospitalized, which happens about two times a year.
“My family and friends at church are my support group,” she said.
Life is really busy, said Ms. Morelli, now a single parent.
Treatments begin before Kaci and Jared get out of bed in the morning, when Ms. Morelli gives them medication through a breathing mask to open up airways. During the night they ingest high calorie formula through their GI tubes.
There are medicines taken before heading out to school. Enzymes are administered before all meals and snacks, and after school Jared and Kaci both receive treatments with a nebulizer and take turns wearing a vibrating vest that helps loosen the mucus in the lungs. In the evening there are more medications, enzymes, acid blockers and vitamins.
One of the reasons Ms. Morelli stayed in Temple following the birth of Kaci and Jared is because Scott & White Children’s Hospital is a member of the Cystic Fibrosis Care Center Network.
“I really believe a cure will be found during their lifetime,” Ms. Morelli said. “There is a lot of hope.”
GREAT STRIDES
What: Fundraising walk. Taking steps to cure cystic fibrosis.
When: 10 a.m. Saturday. Check in at 9 a.m.
Where: West Temple Community Park, 200 Montpark Road.
Note: All proceeds go to the Cystic Fibrosis Foundation. Almost 90 cents of each $1 raised goes directly to research and programs.