FAYETTEVILLE — Still reeling from the news that her infant daughter was seriously ill and wouldn’t survive much longer, Candy Johnson decided she had to do something to help other families with terminally ill children.
Fully supported by her husband Alan, the Fayetteville resident nurtured the idea.
So, as tiny Bethany Danielle Johnson grew weaker and eventually succumbed to spinal muscular atrophy in a matter of weeks in 2005, Bethany’s Angels was born to help others anywhere assistance is needed.
The Johnsons, parishioners at St. Joseph Church in Fayetteville, didn’t know their daughter was ill for the first few months of her life. The couple had a healthy son, David, who’s now a kindergarten student at St. Joseph School.
Bethany’s birth was a welcome addition to the young family. Candy Johnson recalls the praises from friends and acquaintances on their now-perfect family. They had no clue of the loss they would face in less than a year.
“There was no immediate indication” anything was wrong, Candy Johnson said of her daughter. “There were little things” such as problems with nursing and limited mobility, symptoms that, had the Johnson been aware there was a chance Bethany had SMA, might have tipped them off.
But they had no reason to suspect Bethany was ill nor did their family doctor. They believed, as did their doctor, that all babies are different and Bethany was maturing a little slower than her brother had.
By the time she was six months old, Bethany still hadn’t learned to sit up. When her chest swelled out barrel-like, the family’s doctor referred them to a pediatrician, who quickly issued a preliminary diagnosis: spinal muscular atrophy, a form of muscular dystrophy that strikes infants.
That was in November 2005, and even then, the Johnsons didn’t know immediately that their baby might not survive much longer. Like most people, their knowledge of muscular dystrophy was largely from Jerry’s Kids and the annual Labor Day telethon comedian Jerry Lewis has hosted for years.
The Johnsons were picturing their daughter growing up in a wheelchair until some Internet research brought them to a startling conclusion: “We’re going to lose her.”
Most children pictured in the telethon have a form of the disease classified as Type II or Type III. Infants like Bethany have spinal muscular atrophy, classified as Type I. They lack the muscle strength to sit up, crawl, eventually even the strength to swallow or breathe.
Doctors performed a muscle biopsy on the little girl in November, but it was nearly a month later before the Johnsons received the test results, confirming the diagnosis.
By the time the gravity of Bethany’s condition became apparent in December 2005, the family was in Florida, where they had flown so Candy’s grandparents could see the tiny baby for the first time. She became seriously ill on the airplane, was immediately admitted to a hospital and then flown to Children’s Medical Center Dallas, where there are facilities for children as well as an expert SMA physician.
For two days, Candy was in Dallas alone with her daughter in the intensive care unit. In ICU, she explained, nothing is allowed — no drinks, no food, no phones. There was a family room down the hallway where parents could eat and drink during a few minutes away from their children.
“I started with the idea it would be nice to provide a meal maybe once a week,” Candy Johnson said.
Her idea grew to helping families however and wherever they needed it — food, toys, helping make phone calls, doing research, helping with utility bills.
Back home in Fayetteville, Bethany grew weaker over the next few weeks, and the Johnsons, with hospice assistance, cared for her in their home. Candy Johnson said they grew adept at holding Bethany even when she was wearing all the medical apparatus necessary to help her breathe.
They grew stronger in their faith. Candy Johnson, a convert to Catholicism, said the family always went to Sunday Mass and sometimes would do something extra, like a weekday Mass during Lent.
But she thinks God was sending the family a message to jump-start their faith. Bethany played a big part in that, she said.
Each evening, the family prayed. Tiny Bethany would reach for her mother’s rosary and hold on throughout the prayers. When they finished, she’d release her hold on the prayer beads, even if she’d fallen asleep, Candy Johnson said.
“She would hold on to (the rosary) the whole time. … She prayed with us.”
Candy Johnson said she knew that, if Bethany knew the power of prayer, “I better be knowing it too.”
It was Jan. 28, 2006, when the 8 1/2-month-old died. The family is still dealing with her loss, but they’ve wasted no time in setting up a nonprofit organization for Bethany’s Angels. Extended family members, including Alan’s mother, help with the group. No one is compensated for working with Bethany’s Angels.
A silent auction at the church recently helped raise money for the organization and the Knights of the Columbus have also helped out. Candy Johnson has made calls to local hospitals about helping families with patients there, and Northwest Medical Center in Springdale has already responded enthusiastically, she said.
The Johnsons initially thought about directing their efforts to families whose children have SMA but decided against limiting their help to instead include any family with a terminally ill child and a need that’s not covered by another organization, Candy said.
This year she hopes to get the word out to distant locations, including St. Jude Children’s Research Hospital in Memphis as well as to hospitals in Dallas, Chicago and across the country.
The family has set up a Web site (www.bethanysangels.org) that includes contact information as well as information about Bethany, about SMA and a section with prayers and devotionals. The prayers are laid out in easy-to-print format for distribution for “everyone and anyone who needs spiritual nourishment.”
