Against all odds
There are ordinary heroes living among us who smile in the face of overwhelming odds and become a blessing to others.
Meet the Turton family Cherrene, Joshah, Seth and Michael. Their warmth and upbeat spirit belie the difficult journey of living with cystic fibrosis, a life-threatening genetic disorder.
For the past nine years, their 12-year-old son Joshah has been battling the rare disease, which only affects two other young boys in Barbados.
“All the time Joshah had these colds and I was baffled. One week he was good, the next week colds and colds, and I said, ‘I never went through this with my first son’,” his mother Cherrene remembers.
Daddy Michael nods in agreement: “From a baby, Joshua was a little different. We saw signs that we couldn’t understand. One in particular was his stool; it was awful. And we said, ‘He’s only drinking milk, so why this texture?’”
Joshah’s condition was also disturbing for his paediatrician who expressed concern that the young infant was suffering too frequently from chest infections and taking too many antibiotics. One day after closely examining Joshah’s nostril, she saw polyps, small growths that make it difficult to breathe, and instructed the family to take him to ear, throat and nose specialist Dr Christopher Maynard.
Dr Maynard told the family he had never seen such large polyps in a child and he referred the family to a third specialist, who delivered troubling news.
“She [the doctor] said I need him in New York like yesterday; but we still didn’t understand the gravity,” Michael said.
After what the family described as “miraculous” preparation in two weeks, they made the trip to the Cystic Fibrosis Care Centre and it was there the dreaded news was delivered.
“He had to do a sweat test to find out what was really happening,” said Michael. “They put a machine onto his hand that caused his body to sweat to measure the content of the salt. At the end of the test and after examining the symptoms, the unusual stool, the polyps, his being petite, they said, ‘This child has cystic fibrosis’.”
The disorder affects the lungs and digestive system, making children vulnerable to repeated lung infections. It also disrupts the normal function of cells in sweat glands and glands that line passageways inside internal organs, causing a thick, sticky, coating of mucus.
In the pancreas, this mucus blocks channels that carry important enzymes to the intestines, preventing the body from properly processing or absorbing fats and other nutrients.
“It was a blow –– something I’ve never heard about. We thought it was a little cold or asthma; we knew nothing about cystic fibrosis,” Cherrene admitted.
Michael who was equally stunned by the diagnosis said the seriousness of the situation hit him as he looked at the number of medical professionals in the room.
“There were paediatricians, nutritionists, surgeons telling us what we would have to do. They opened their cupboards in the room and gave us so much medication, supplement, enzymes and so on!”
For Cherrene, it was a life changing experience and scary.
“It was a 360 degree turn that left you wondering if you are in a Hollywood film.
“I had to become a nurse. They taught me how to administer a whole range of medication, the correct measurements and everything. It was really overwhelming. Many times I sat down and I cried, ‘Lord help me get this, so I don’t administer the wrong thing’.”
For Michael, it was equally traumatic, especially when Joshah had to undergo surgery. Joshah has three consecutive surgeries –– in 2007, 2008 and 2009.
“To walk out of that room knowing that anything can happen in surgery is one of the hardest things,” he admits.
Since then, there have been significant improvements, but keeping Joshah healthy has been an ever-present challenge.
“It is extreme cost, extreme medication; and it takes it toll,” Michael said.
Twice a day, in the morning and evening, Joshah has to endure a complex routine. He has to don a vibrating vest for an hour to loosen mucus in the lungs, use an inhaler and a nebulizer and take antibiotics to prevent lung infections.
“For every single meal he also has to use two enzymes –– every single meal, whether it be a shake; every snack. So that if he uses a juice and a pack of chips, he has to use the enzyme before, because the body needs to extract the nutrients from the food to absorb in the system,” Cherrene says.
Michael explained: “That is because the mucus builds up in the system and it blocks the pancreas. In a normal person the pancreas produces the enzymes to digest the food, but because it blocks the pancreas you need external enzymes to do the job.”
But that’s not all. The cost of the medication is prohibitive.
There are two medications –– one called Pulmozine and a box [costs] US$5,000 and Tobramycin which is US$7,000.
The couple admits that like any other family, there are good days and bad days.
“He gets frustrated with his routine; so sometimes we just say, ‘Forget it!’
“I have to call on some of the churches to intercede for us because sometimes it can be that overwhelming – it affects you financially, socially. You definitely need that support,” Cherrene says.
Still Joshah is a trooper and he’s learning to take one day at a time.
He shyly told Health Today: “I’m simply a regular kid. I love football. I can do art well.
“It is hard at times, but not all the time. I am happy.”
Inspired by their son, the Turtons founded the Cystic Fibrosis Foundation Of Barbados three years ago to raise awareness about the disease and to provide assistance to people living with the disorder.
“You recognize this is not going to get better if you sit and do nothing. It energizes me because I see the foundation as an avenue to help others.
“Failure is not an option, because if you fail the consequences are deadly.”
(Next week we’ll share more about the work of the Cystic Fibrosis Foundation.)