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Home › Dad of the Month

Brian White

By Jenn Director Knudsen

Each month, iParenting.com spotlights a father who inspires and moves us, who embodies the qualities that we all admire in a person, a man and a father. Above all, the Dad of the Month is dedicated to his children. Rich or poor, famous or not, he shines as an example of what fathering is all about.

Brian White from Fairfax, Va., suffers from Pompe disease, a degenerative disease so rare it's called an "orphan disease" – fewer than 50,000 people worldwide have it. But you wouldn't know it by talking to him.

Instead, like most dedicated parents, he mainly struggles with how best to raise his two sons. And that's what defines him – his family. Not his full-time job, nor Pompe disease, nor his advocacy work for it. All that pales in comparison to his devotion as Timothy and Christopher's dad.

"Part of me doesn't want [my sons] to think of me as handicapped," says White, 42. "It's probably more a problem for me mentally than anything just to deal with it," he says of Pompe disease. "All in all, it hasn't handicapped our family."

Sports Fan and Coach
White is a sports fan in the true sense of the word's root – "fanatic." An athlete himself, White loves following sports on TV and taking part in them with his sons, Timothy, 11, and Christopher, 8.

White says when he returns home from his job as a senior regulatory representative for Columbia Gas Transmission – less than 10 miles from home – and after his kids have finished their homework, the three romp around for hours in their spacious basement.

Get White's recipe for Hamburger Biscuits here!

Playing ping-pong, throwing around Nerf balls, shooting baskets. "We do lots of sports in the basement," White says. Especially on weekends, he and the boys take in lots of sports on TV and on the field, and White is committed to watching his sons play on their various teams. "Each of the seasons, they're playing on a Little League team," he says. And it's baseball in the spring, swimming in the summer and basketball in the winter. This winter, as in those past, White is the coach, too.

White says he laments the overemphasis in kids' sports on winning and not just on playing. So his coaching philosophy reflects his desire to get each little basketball enthusiast's hands on the ball, win or lose. "I think we had one play," White laughs, explaining how three years ago he got Timothy and his eight pint-sized teammates' paws on the ball as much as possible. White now is preparing to coach his younger son's team.

"We don't do diagramming of any plays at this age," he says. Rather, each boy on White's team gets to play point guard – the guy who gets the ball the most – instead of only one position. "So let's just say I was kinda coaching, kinda herding," he says. "No one really coaches nine 8-year-old boys."

Then it's perhaps ironic that four years ago while watching his boys play outside in the court, White passed out, collapsing to the ground. The episode got him on track to an eventual diagnosis.

Pompe Disease
About four years ago, White started to experience odd symptoms. He says he'd fall asleep in short bursts throughout the day. At the wheel of his car, at his computer at work, while watching his kids ride bikes and play. "This kind of 'nodding off' wasn't just because you're not sleeping enough," he says.

He initially was diagnosed with narcolepsy, a chronic, neurological sleep disorder characterized by uncontrollable sleep attacks. But routine treatments for narcolepsy didn't remedy White's problems.

So after further testing – including two muscle biopsies and several sessions with sleep specialists – a team of doctors at Johns Hopkins University's School of Medicine in Baltimore diagnosed White with Pompe disease.

Everyone's body produces, breaks down and turns into energy a sugar called glycogen. White's body, however, only can process a certain amount of this sugar. Instead of the excess glycogen being absorbed and used by the body's muscles, the sugar adheres to White's muscles and slowly eats away at them.

"Eventually, over time, [the excess glycogen] has started to eat and erode the muscles," White says. And the muscle most affected by this anomaly is his diaphragm, the muscle in the middle of the abdomen responsible for regulating breathing.

His random – and scary – sleeping bouts throughout the day happened because his body couldn't take in adequate oxygen, nor could it get rid of excessive carbon dioxide while lying flat. His diaphragm muscle had weakened, inhibiting normal breathing.

He says a sleep study concluded he had five times the normal amount of carbon dioxide in his system. "I was living in a carbon dioxide haze, actually," White says. "I can't breathe in when I'm flat; it's pretty scary. I can't sleep [lying down] really at all."

Treatment and Maybe a Cure
To allow him to live – but not be cured of Pompe disease – White sleeps with a bi-pap machine. In bed, he wears a mask over his nose and every 16 seconds the machine shoots a burst of air into White's airways.

The machine, says White, "is forcing me to breathe because my [diaphragm] muscle can't breathe adequately. It didn't cure the disease but it did cure the immediate problem the disease was causing."

But a treatment to arrest his condition may be on its way. "We're keeping our fingers crossed that the worst is here and the better will be coming," White says.

And it may be. Genzyme, one of the world's leading biotechnology companies based in Cambridge, Mass., is developing an enzyme-replacement therapy called Myozyme. The therapy will introduce an external source of the enzyme people like White are missing. It also will metabolize the unprocessed glycogen that accumulates in the bodies of Pompe patients and causes muscle deterioration, according to Bo Piela, a company spokesperson.

"Patients would need to receive intravenous infusions of the drug every other week for the rest of their lives to regularly replace the missing enzyme," Piela says. Genzyme expects U.S. Food and Drug Administration approval of Myozyme in early 2006, and price information is being withheld pending approval, Piela says.

"I'm a fairly mild case, actually," White says of his condition, given his knowledge of and interaction with other Pompe disease sufferers here and abroad who are wheelchair-bound or on ventilators. White's wife, Sarah, 41, praises her husband's fighting attitude and his dogged desire to keep family life as normal as possible. "It is very hard physically [for Brian] to go outside and play a game of football with the boys, yet he insists on doing this on a regular basis," she says. "The neighbors who might observe the game of catch probably wouldn't realize how much effort it takes Brian to even throw the football because he does it on such a regular basis without complaint."

White also suffers muscle weakness in his arms and legs; he no longer can be as active with his sons as he was once, and swimming – including one of his favorite summer activities, body surfing – now is nearly impossible to do. As is frolicking with Timothy and Christopher at water parks. "It [the water pressure] hurts me; it's hard to breathe in six feet of water," he says.

White says this year he talked for the first time with his sons about his disease, prognosis and current and probable future interventions. He says since their talk, his sons don't seem scared about their dad's longevity. He's unsure how much they understood and believes they may not really want to understand.

But the boys do know their dad is different. White now walks "funny," he says, due to his muscle weakness. The boys know their dad sleeps with a machine strapped to his head and face and their father no longer can participate as much in their active lives as he once did.

Just a Regular Parent With Regular Worries
Perhaps surprisingly, White says "the biggest problem" in his life is not his incurable disease, but limiting his sons' excessive exposure to and use of media, be it the TV, computer, video games, Internet or MP3s.

White and Sarah try to place limits on how much their sons can watch, use and play each day. "We try to control it that way," White says, wishing aloud both his sons would read and play imaginatively more each day without desiring to be plugged in so much.

As for reading, White, who earned a bachelor's degree in history in 1985 from The College of William & Mary, can't get enough of The Washington Post, magazines or his books. White gets up each morning at 5:45 – before the rest of his household stirs – to read before heading off to work, and he reads late into each night.

White's Recommended Reading List

"I really like books about the sea and some of the perils people go through on the sea," White says. "I've got a bit of a paranoia about water and this probably feeds it."

Here are some books White recommends or is currently enjoying:

"I'm a big '60s rock-and-roll fan and have seen my share of Grateful Dead shows," White says.

White also recommends:

When White and his boys are all at home, he doesn't do much without them during their waking hours. "I think Brian genuinely has an attitude of not wanting the disease to define who he is," says Sarah. "If he didn't have the disease he would be out there doing the sports with the boys, so he isn't going to let any physical pain or discomfort stop him from doing what he feels he needs to do as a dad."



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