Stuff to know.
Parents of sick or disabled children seek out one another for comfort, help and knowledge. The urge is primal, but technology makes it easier to fulfill: Just type the diagnosis in an Internet search box to find a dizzying array of links to advocacy clubs, chat boards and support groups.
Don Hopkins and his wife, Patricia Evans, were no different in their desire. Every day, they tried to find someone with a child like their Austin. "We'd punch in Pollitt syndrome over and over," Hopkins said. "There was no one." Doctors at Nationwide Children's Hospital knew about the rare genetic condition, documented fewer than a dozen times worldwide, only from descriptions in medical texts, he said. They couldn't even tell the family how long Austin might live. Hopkins said Dr. Annemarie Sommer put it this way: "He's writing his own book. And right now we're in this chapter."
Years passed, the family coped, and Austin grew older, if not much bigger. People with Pollitt syndrome have brittle hair, impaired mental and physical growth and a host of other abnormalities. Some are as minor as stubby eyebrows and big ears; others are severe, such as Austin's lack of myelin, the body's insulating layer for the nervous system.
The 16-year-old Beechcroft High School freshman is about the size of a second-grader and weighs little more than 50 pounds. Nonetheless, Austin sings with the gusto of Pavarotti, swings a baseball bat with everything he has and pals around with a giant mastiff named Louie. "He teaches me what love is every day," his father said.
Austin has remained a fairly happy kid. So on the day in 2004 when Hopkins again typed Pollitt syndrome in the search field, he wasn't feeling particularly anxious. The newspaper article that popped up nearly took his breath away. "For the first time in Austin's life, we saw someone who looked like him," Hopkins said. The story came from Birmingham, England, and carried a chilling headline: Who will love this boy? And then it was gone. The couple couldn't find the story again to print it out, and no amount of back-button hitting and searching seemed to work.
Hopkins, 50, works in the brewery department at Anheuser-Busch and knows a lot more about beer than computers. He blamed himself and started over. "I must have gone through every archive in England," he said. Meanwhile, Austin hit a few rough spots. Consumed with growth-hormone treatments, hospitalizations and the demands of six- and seven-day workweeks, the family stepped away from the search.
"There are times when you really just have to live day by day," Evans, 54, said as she rubbed her son's tiny hands. Evans works for the Bureau of Disability in the state's Rehabilitation Services Commission, so she's no stranger to struggle. But with Austin, "the list of what can be wrong is so very long."
Austin has always been too thin. He is able to eat some on his own, but about a year ago, doctors pushed for a feeding tube. While he healed from surgery, Evans and her husband made plans. They had found the article again -- about a boy-size man named James Henlan who was born with Pollitt syndrome and abandoned by his family. The story in the Birmingham Evening Mail explained that James' elderly foster parents, who had agreed to provide a home for three weeks but wound up caring for him for 10 years, were too frail to continue. But the story was 4 years old. Where was James now?
"We were determined to find out," Hopkins said. "If they're the only two people like each other in the world, they have to meet." Fifteen months later, the couple was ready to fly with Austin and his 19-year-old brother, Blake, to England. The family had scrimped and saved. Beechcroft students collected more than $1,000, musicians played benefit concerts, and a young pilot named Monya Peck solicited donations and sold candy bars until she had $2,500.
Peck knew the family only because Austin and his dad had gone to her house to buy ceiling fans she'd listed for sale. "I heard the whole story," Peck said. "I thought, 'There's no way that trip shouldn't happen.' So I wrote letters, and I took up selling chocolate."
When the Hopkins family arrived in England last month, James was splitting his time between a group home and a charity-run care center. He was 27. Did that mean Austin would make it to adulthood? But James was nearly blind and deaf. Austin's parents wonder whether that will be his fate, too. "It was a Sunday when we got there," Hopkins said. "I just stood outside his home. There was so much I wanted to know. All I could do was cry like a baby."
Austin and James played it cooler. "He looks like me," Austin said with a grin. "And he likes music, too!" James doesn't speak. He hugged Austin, smiled broadly and excitedly rubbed a finger along his nose, his way of saying, "I love you," one of his caseworkers, Trish Nolan, explained. "To watch them together was wonderful," she said.
The meeting was a bustling affair, and James clearly adored the warmth and attention. "But it's not the same as having a family," Evans said. That knowledge is the gift the couple took back to the north side of Columbus. Instead of finding out what more they could do to help their son, they glimpsed the life Austin might have had if they had not already done so much.
They remain in contact with those who care for James and are sending him gifts and photos until they can return. Hopkins is advocating for a mentor -- a big brother, like Austin has -- to be a part of James' life. "We've got our support group," Evans said, smiling, "with a membership of two."