Mt. Pleasant couple battles for future of their daughter
By TRISHA PHELPS
Mt. Pleasant News
“The scary part is, we don’t know what to expect,” said Mary Beth Caboth, mother of a three-month-old baby girl, Ellie, who was diagnosed with Cystic Fibrosis (CF).
Before her daughter was diagnosed with CF, Caboth knew nothing about the disease. Now she is partnering with her employer, Two Rivers Bank and Trust in Mt. Pleasant, to help educate as many people about the disease as she can.
“I turned to the bank and the employees, because we are kind of like family here. I asked if we could do some type of awareness things and shared some ideas that I had,” said Caboth.
Caboth explained that since the bank usually decorates for May Day each year, she asked if this year during May, she could decorate with CF purple ribbons and hang informational posters about Ellie’s story and other CF facts.
“They were behind me 100 percent. They pitched in idea, helped make ribbons and all of the employees are wearing purple ribbons,” said Caboth.
“Essentially it is a protein gene that is defective, which means for whatever reason it doesn’t work correctly. Because it doesn’t work, it affects the pancreas and the digestive system and the lungs. It causes the pancreas to not make enzymes, or enough enzymes to break down the nutrition in food for the body,” explained Caboth. “CF can cause this mucus which can build up in the lungs and cause infections, bronchitis or pneumonia and people with CF tend to have a lot more lung problems than other people. It is not uncommon for CF patients to have lung transplants. People die from this every day.”
Three months ago, Caboth and her husband, Cale, welcomed Ellie into the world and a week later were hit with very serious news.
“We were just sitting at home having a nice day and at about lunch time I got a call from the doctor that she had high testing levels for CF. They scheduled us within four days, so I knew it had to be something serious because her next checkup was only a week away,” recalled Caboth. “It was hard to digest being that we are first-time parents. We had always said we didn’t care what we would have as long as the baby was healthy, then we got hit with the news that she had a disease. That first weekend was very hard for us.”
At Ellie’s doctor’s appointment she was tested for CF using a sweat test to measure the salt in her sweat.
“If you had certain numbers then you don’t have CF, but you are a carrier. If you have other numbers then you definitely have CF. Ellie’s numbers came back at triple what they should have been, so she definitely had it,” said Caboth.
Soon Caboth and her husband went to their computers to figure out just what CF was and the challenges they would be facing.
“One of the first things I read was that the average lifespan for someone with CF is only 37 years old. I kind of just froze. I couldn’t go any further,” said Caboth. “That was when it hit me how serious this is.”
While CF is a genetic disease, neither Caboth, nor her husband knew they were carriers, because no one in their family had the disease.
“The only way to get Cystic Fibrosis is to inherit two carrier genes. Apparently Cale and I were both carriers of the defective gene,” explained Caboth. “Just the right people were carriers to give it to Cale and me. We don’t know anybody in the family who has it, but it is kind of similar to passing on the eye color gene. You don’t have to have blue eyes in the family, but if you are a carrier for that gene and you get the right pairing, then your kid could end up with blue eyes.”
For now, Ellie is doing well.
“She is in the 95th percentile in her growth and weight. Doctors have said this is the best she can be doing and it’s been a while since they have seen a newborn with CF to be as healthy and alert as she is, so that is good,” said Caboth.