THE VIRGINIAN-PILOT
Copyright (c) 1994, Landmark Communications, Inc.
DATE: Monday, December 5, 1994 TAG: 9412020181
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: By VICKI L. FRIEDMAN, STAFF WRITER
DATELINE: PORTSMOUTH LENGTH: Long : 190 lines
The black-and-white checkered ball fascinates 10-year-old Chris Paige so much that he doesn't want to leave the soccer field.
The 4-foot-8, freckled youngster is oblivious to the shouts of his father, Addison, who is urging his son to move toward the car.
Chris clutches his ball and begins heading in that direction, but quickly, he's mesmerized by a game on an adjacent field.
``Christopher!'' his dad beckons more firmly.
Finally, Chris moves toward the parking lot, giving his ball a healthy kick every few feet until it dribbles to the car door. But no sooner does the car hit the driveway of his family's Churchland home, than Chris is itching to go into the back yard and - you guessed it - have a few kicks with the best birthday present he ever received.
It's hard to coax Chris Paige off the soccer field. Maybe because it's a miracle he's even on it.
Roberta Paige, a former nurse, fretted her whole pregnancy about potential complications. Before realizing she was pregnant, she had ingested a medicine for hives. Besides that, Roberta was 39, already a mother of two, Sean, now 17, and Rachel, 12.
But the day Christopher Addison Paige was born - May 3, 1984 at Portsmouth General Hospital - she was relieved.
``He was born healthy,'' says Roberta, a young-looking woman of 50 who's seated next to her husband, Addison, on the living room sofa. ``And it was a tremendous high, so I shot way up.''
But three days later, Chris was circumcised.
``And,'' his mother says letting out a breath, ``I shot way down.''
The doctors couldn't stop the bleeding from Chris' circumcision, and immediately, Roberta was asked if hemophilia was in her family. As best she knew, it wasn't.
Six days later at Maryview Hospital, Chris was tested for hemophilia - a hereditary condition in which one of the normal blood clotting factors is absent, causing prolonged bleeding from even minor cuts. He tested normal for Factor VIII, the most common missing clotting factor. Instead, he was deficient in Factor IX, the rarest form of hemophilia. The doctors classified 2-week-old Chris a severe hemophiliac.
The ``severe'' diagnosis frightened the Paiges. ``The day we got the diagnosis, I was shocked,'' says Roberta, who was used to being on the other end of unsettling medical news. ``Suddenly I was on the other side. I was one of them.''
Hemophilia is a gender-linked hereditary bleeding disorder in which the defective gene is located on one of the two X chromosomes carried by the female. The major problem for hemophiliacs is uncontrolled internal bleeding, which if not treated quickly, can result in severe pain and swelling that could lead to arthritis and permanent damage to the joints. Apart from the absence of one protein, the child is normal in every way.
Initially, Chris was treated with plasma protein, but his bleeding - still a steady oozing from the circumcision - continued, and the Paiges had no choice. Chris had to be treated with Factor IX, the infusion of a clotting factor derived from human blood. It was a somewhat risky procedure in 1984, when the blood supply was not completely purified and transmission of HIV was a possibility.
Chris spent several nights in Children's Hospital of The King's Daughters waiting for the bleeding to stop, even after the treatment. Finally, he was discharged and the Paiges were told, ``You can take him home to bleed.''
That didn't sit well with Roberta, who is the first to call herself pushy. ``I didn't like the way the whole thing was handled,'' she says. ``I was used to working in New York City, where they had social workers and people to talk to you. We were given no handouts, nothing on this disease.''
The Paiges, who now have a thick file of hemophilia pamphlets and newsletters at home, started a support group that August - now the Southeastern Virginia Branch of the National Hemophilia Foundation, which has grown to 75 families. Roberta lauds King's Daughters today for having one of the top hematology teams in the nation, but 10 years ago, she says, hemophilia was uncharted territory for the hospital and the state of Virginia.
So she took Chris, then 16 months old, to New York Hospital to see hematologist Margaret Hilgartner, author of the recent book ``Hemophilia and the Child'' and a specialist in the field.
Roberta recalls, ``She just looked at him - we were still in the doorway - and she said, `Your chief concern is AIDS. That's what you need to be concerned with.' ''
The words scared Roberta then, and even today, any mention of AIDS perks up Chris' ears. Gazing up from his floor seat, he tells his mom, ``I don't have AIDS.''
``No, you don't,'' she assures him. And he didn't then either; Chris was found to be HIV negative. But Hilgartner found something else. Chris, she said, had been misdiagnosed. She classified him a mild hemophiliac and recommended that the Paiges have Chris checked annually at a hemophilia clinic.
Despite the conflicting diagnoses, Roberta felt secure with Hilgartner's opinion because the doctor was a leading authority in the field. ``It was like 6 million pounds had been lifted off me,'' she says. ``I just wept.''
Chris Paige was playing soccer before he was walking.
``When Chris was learning to walk, I held his hands and he was kicking a soccer ball back and forth with his brother,'' says Addison Paige, a graphics assistant in Virginia Beach.
Parents of hemophiliac children often struggle regarding their child's level of activity in sports. Participation in sports carries certain risks because of the potential for uncontrollable bleeding from the slightest injury. But sheltering a child too much has psychological implications.
Dr. Eric Werner, director of hematology at King's Daughters and Chris' doctor, says: ``I tend not to be a person who puts activity restrictions on. Ultimately, it's the family's call.''
Chris played on his first recreational soccer team when he was 6 years old. The Paiges realized the risk, albeit minor.
``Why did we do it?'' Addison asks. ``I felt Chris would be OK.''
``And also he had had stitches a number of times . . . ,'' Roberta adds.
``Four,'' chimes in Chris.
``. . . without problems,'' Roberta finishes.
Always on the permission slip, Roberta indicated that Chris was a mild hemophiliac. Only once did it cause a problem.
``Elbow pads, knee pads, mouth guard, helmet; gosh, I hated it,'' grumbles Chris, referring to the equipment one rec coach insisted he wear to play goal, the only place on the field that that coach would let him play. He decided not to join that team.
Last year, Chris asked his parents about playing select ball, a more competitive level with more physical contact and exertion, for the Elizabeth River Soccer Club. The Paiges said they checked with the doctor and were told it would be too much of a risk.
``The doctors didn't want him to get used to the mind-set of regional soccer,'' Roberta explains.
So Chris did the only thing he could think of. He prayed. Every day. He prayed that his ``factor level'' would go up.
The severity of hemophilia is related to how low a person's level is, with an average normal range being 100 to 150. Severe hemophiliacs have less than 1 percent of the normal level of active clotting factor. Chris' level was 16 percent.
``Twice a day, every day, he prayed,'' says Rachel Paige, a soccer player herself. Like her brother, Rachel is home-schooled, and every morning, she listened as Chris called on the Lord.
``I pray that my factor level goes up, so I can play select soccer,'' Chris said, slowly recounting the words he said in school and before dinner.
One year later, Chris reminded his mom that his factor level needed to be tested. And although the Paiges were told not to expect much of a change, the results had improved. Chris' level had increased to 28 percent.
```That's a tremendous increase,'' Roberta said to the doctors. And they said, `It doesn't make any difference. He can swim.' '' Swimming, a noncontact sport, was considered less risky than soccer.
But Roberta checked with the National Hemophilia Foundation in Washington, and she was referred to a doctor in the District of Columbia.
``They were very impressed,'' she says. ``They said it was very significant.''
It took some doing - more consultation among doctors, more prayers by Chris - but finally, Chris was doing more than playing ball in the yard. He was wearing No. 4 for the Renegades.
``I guess I've learned to find out where the experts are and go to them,'' Roberta says as Chris prepares for a weekend game. ``It helps to be pushy.''
Elizabeth River select coach Ashley Wallbank had eyed Chris for years. ``I've known Chris since he was too young to play,'' Wallbank says. ``I felt he was way above the other recreational players. . . . He's always been obsessed with the game.''
Chris, who is finishing his first season with the Renegades, says the best part of soccer is scoring goals. Practices are three times a week, and games are every Sunday. The Renegades are preparing for a mid-December indoor tournament and the State Cup competition in the spring.
``He made a goal his first game,'' says sister Rachel, who brags often about Chris' athletic skills. She says: ``Everybody always asks me: `Are you Chris Paige's sister? What's it like to be Chris Paige's sister?' Everybody wanted him on their team.''
Roberta and Addison Paige are quiet rooters in the stands for the Elizabeth River Renegades. Addison is restless during games; the most emotion he shows is an encouraging shout of ``C'mon, Chris.'' Roberta is even quieter. While other parents rowdily cheer for a physical game, Roberta glares at them.
``The goalie is lying flat on his face and people are yelling, `Good try,' '' she says, shaking her head while she watches the Renegades battle the Magic, the under-11 select team from Richmond. ``I tell you,'' she says with a laugh, ``I'm not a soccer parent.
``We don't scream or yell, but we're still involved as parents.''
Addison adds, ``We're involved emotionally.''
So is Chris. Rachel refers to him as ``a man of few words.'' He hates school. ``It's boring,'' he says. Roberta, also his teacher, says he excels at math but has problems with spelling. She piqued his interest in reading by having him follow recipes.
``He bakes. He makes lattice-top crusts,'' says Rachel. ``Cherry and apple pie, and what else? Bread.''
Chris likes working with his hands. And, of course, his feet.
Roberta Paige says she's totally relaxed watching her son play. ``I'm aware of the grace of God,'' she says. ``Every time I see him play, it's like, well, a miracle.'' ILLUSTRATION: Color photos by Paul Aiken, Staff
Chris Paige, right, gets off a kick while playing for the Elizabeth
River select youth soccer team.
Chris' parents, Roberta and Addison, at right, are quiet rooters for
their son's team.
Chris is greeted by his mom after a game.
by CNB