Faith helps family battle cystic fibrosis

The youngest of seven, one-year-old Benjamin Taylor has been taught all the tricks his five sisters and one brother have to teach.

Chant “left, right, left” and he’ll march as high as he can lift the new bulky boots laced around his feet. Ask to see his muscles and he’ll curl his arm and grunt. Tell him to make a funny face and he’ll tug the corners of his mouth with his chubby fingers. Catch the youngster in the frame of a camera lens and he’ll lift his shirt to point proudly at his belly button set squarely in a full, round tummy.

“He’s a ham,” said Jim Taylor, Ben’s father. “He’s at that age where he loves copying whatever the other kids are doing.”

But the toddler has a few acts in his repertoire that are all his own, like “pat pat time,” a routine invented just for Ben. That’s when all the Taylor children — Amanda, 18; Mallory, 14; Madison, 12; Clara, 8; Emily, 6; and Mark, 3 — gather around the child and he wiggles and dances while one of his parents, either Jim or his mom, Melissa, thumps his chest and back with a round metal device.

Or, there’s the dress-up trick he does with “TOBY,” which in the eye of a child resembles a costume’s mask.

Ben has cystic fibrosis (CF), an inherited chronic disease that affects lungs and digestive systems. A defective gene passed on by both parents causes the body of those with CF to produce unusually thick, sticky mucus that clogs the lungs and obstructs the pancreas from breaking down and absorbing food. More than 30,000 children and adults in the United States have the disease.

The “pat pats” are chess compressions that help shake off the harmful mucus. Without the soft blows, the thick coating of mucus stays adhered to the lungs, attracting life-threatening infections.

And, “TOBY” is a nickname for the antibiotic, tobramycin, which combats infection-causing bacteria settled on his lungs. Every other month for 30 days, Ben spends 30 minutes each day and night inhaling the medicine, which is vaporized by a nebulizer, through a plastic breathing device he presses to his face.

Ben is the only one of the Taylor children who has CF — a miracle in the eyes of his parents and an aberration from statistics that say one in four children born to parents who both carry the defective gene will have CF.

“Someone once asked me if we had a number in mind — this was when we had six children — and I said that four was our number. But after the fourth, we changed our thinking a bit,” Melissa Taylor said.

“We like to joke that we had Ben so that people would stop asking us if we just kept having kids until we had a boy,” Jim added. “God said, ‘Be fruitful and multiply.’ He’s a big God, he can handle it.”

The couple, whose lives are rooted around their faith, had agreed to let the quantity of their family be in God’s hands, but after the past 18 months, they agree Ben will most likely remain the baby.

Jim and Melissa were high school sweethearts. Their 26 years together began with dinner at Wendy’s and a minor league hockey game, during which Jim won Melissa over with his laugh, she said. After four years of dating the Fort Worth natives married, and then in 1996 the couple and their then-four children followed Melissa’s parents to Goodlettsville where the two families, along with Melissa’s sister’s family, live in three houses on 23 acres.

Their experience with CF began in May of 2006 when Ben was just 11 weeks old.

“We had noticed that he was kinda small, but that was only because a friend of ours had a little girl the same age, and a lot of people would comment on how small he was. We didn’t think much about it because he ate well and slept well — not much to give us cause for alarm,” Jim said. “Then one day I noticed that his calf looked swollen. The next day his feet started to swell.”

Melissa took the baby to see the family doctor, who prescribed a dose of antibiotics, but when the swelling had failed to diminish by the next day, she panicked and took Ben to see a pediatrician. From there, Ben was sent by ambulance to Vanderbilt Children’s Hospital.

“This was a Thursday evening. We thought maybe we’d spend the night and go home the next day,” Jim said. “Little did we realize we’d be in the hospital for 43 days.”

Ben endured a battery of tests, but nothing was revealed for the first week. CF was ruled out after Ben passed a “sweat test,” which tests for salt in perspiration, and because none of other Taylor children had the disease. It was later revealed that Ben’s swelling was because his little body could not process protein, which provides fluids for the vascular system and so there was not enough sweat to give accurate test results.

Meanwhile, Ben’s condition was worsening. His whole body began to swell to the point that his eyes were swelled shut; he became dependent on a respirator that was meant to be temporary during a gastro intestinal test; and his tiny face was constantly covered in tape, which secured the feeding tube that extended down his nose to his stomach.

“It was beginning to look bleak. It looked like he was dying and there was nothing they could do for him,” Jim said.

The parents took shifts at the hospital, but the children were left at home to run the house. And, because of the rules governing visiting hours, it was nearly two weeks before the children were able see their brother. The head nurse waived the two-person limit and allowed the seven Taylor siblings to enter Ben’s room at once.

“It was pretty hard because we were here a lot by ourselves,” Amanda, the oldest daughter, said. “It was pretty hard to see him like that.”

Ben’s diagnosis came two weeks into his hospital stay and just moments after a special visit by one of Jim and Melissa’s close family friends.

Jim was in the middle of explaining that the doctors had mentioned CF was a possibility and that he knew very little about the disease, when the friend interrupted.

“She said, ‘I have cystic fibrosis.’ She’s 35 years old and has three children. This peace came over us. It was God saying that it was going to be OK,” Jim said. “Not five minutes later our daughter called to say that the doctors were looking for us. We went up to Ben’s room and the doctor said he had a diagnosis for us and that we may want to sit down. He told us and we didn’t break down or lose control like he expected us to. God had prepared us.”

Once Ben’s condition had been identified, he was given medicine that helped him break down and get nourishment from his food and antibiotics to help ward off infection, but it was still 30 days before the baby was stable and strong enough to return home.

Now, before any meal or snack, Ben must take enzymes — capsules his parents break open and sprinkle on applesauce, and take the “TOBY” treatments every other month. And, Ben, who was once an underweight baby is now a sturdy toddler almost the size of his 3-year-old brother.

According to the Cystic Fibrosis Foundation (CFF), in the 1950s, children with CF were not expected to live to the first grade. In 2000, the average was 32. The current life expectancy for someone with CF is 37 years old. There is promise in those numbers, and to Jim that’s every reason to devote his time to a cure.

“Ben is doing well and those [treatments] are minor inconveniences, but that’s because of the research that went into developing the enzymes and the medicines we have. That’s taken years to develop and millions of dollars — the drug companies aren’t in the business for the warm fuzzies of saving lives, it’s about the dollar, and that’s why I’ve gotten involved. I know it takes dollars to get us where we need to be… 37 is encouraging to me, but it’s still not good enough. I want to make sure Ben outlives me,” Jim said.

Since Ben’s diagnosis, Jim organized bake sales, yard sales, dinners, auctions, letter-writing campaigns, bluegrass parties and charity walks to raise cash for the CFF to aid the cost of research and drug development.

With each event, Jim said he gets more efficient and effective at utilizing resources and targeting potential sponsors and donors. He was also put in charge of the CFF’s 2008 Celebrity Golf Tournament on June 23 at the Old Natchez Country Club.

“For a lot of people, it’s not easy to ask someone to give money, but for me, the stakes are so high that it makes it easy for me to ask. There are some days that I get tired and frustrated — not everyone gives what I want them to give, and at times I feel like I am alone in this fight, and then there are days I get good news that we picked up a sponsor or someone is willing to give big and it’s the motivation I need to trudge on,” Jim said. “If we can get CF to stand for “cure found” that’s great, or to develop a drug to help take off symptoms and I’d love to know that Ben is going to have a big family if that’s what he desires.”

To donate or get involved, contact Jim Taylor at jt4CFcure@gmail.com or the Cystic Fibrosis Foundation Nashville at 255-1167 and cff.org/chapters/Tennessee.

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