October 16, 2008

Fun Raising

Hoops for Hope raises funds, unites a community

By Carol Rosen
Editor

One of the worst things that can happen to parents is to watch their child die.

Thirty-eight teams, including about 200 players and at least 60 volunteers from local high schools as well as adults from Almaden, participated in Hoops for Hope. High school students earned community service hours by helping out. Pictured above: girls’ high school basketball action.

Three years ago the Powery family of Almaden went through that tragedy as 10-year-old Christiana succumbed to an extremely rare children’s disease called juvenile dermatomyositis, which strikes about three out of every million children. Also a victim of juvenile rheumatoid arthritis, Christiana was in remission from that disease when she began showing signs of juvenile dermatomyositis.

“In spite of the arthritis, which was worst in her left wrist—and she was left-handed—she was able to shoot baskets anyway,” sad her mom, Maria Powery. “She absolutely loved basketball.”

In fact, Christiana and her team played in the NJB Nationals in Los Angeles in 2003, quite a treat for a team made up of 8- to 10-year-olds.

But in January 2005, her parents noticed that Christiana was losing stamina and her muscles were weakening. But the disease was so rare, “it took the doctors from January until July to diagnose her illness,” said her mother. The girl who would run long distances on the days she didn’t have basketball practice, weakened to the point she could not finish a lap, couldn’t shoot a basket and couldn’t brush her hair. Once they finally diagnosed the disease, the doctors put her on high doses of steroids, which didn’t improve her condition and caused several complications.

Christiana was able to attend one week of fifth grade at Williams Elementary before she went into Lucille Packard Hospital, where she died in December of 2005.

Research, awareness
The Powerys have turned the tragedy into a campaign that doesn’t just remember their daughter, but provides them the ability to raise awareness and money for research to fight and possibly put an end to these childhood autoimmune diseases. The family, including Dwight (Christiana’s father) and her two sisters, Serena a senior at Leland and Evelyn, a junior at UCLA, all work together to raise awareness and the money to fight back.

The Golden State Road Warriors are shown above teaching Almaden Resident Nicole Johnston some of their techniques.

Since Christiana’s death, the Powerys have held two 3v3 basketball tournaments. The first tournament was held in the fall of 2007; the second last weekend at Pioneer High School. Seventeen teams participated in the first tournament and the Powerys raised $7,600 for Friends of CARRA, (Childhood Arthritis and Rheumatology Research Alliance).

But the second tournament, despite the economic crises, did even better collecting about $11,000 from the games, food and silent auction, which alone raised about $5,000. There were 38 teams, about 200 players and at least 60 volunteers from local high schools as well as adults from Almaden. Among the high schools providing volunteers who were earning community service hours by helping out were students from Leland, Pioneer, Leigh, Valley Christian, Presentation, Archbishop Mitty, Oak Grove, Sobrato and Santa Teresa. Those and other schools also sent basketball teams.

In addition, college division-one teams, some pros and coaches also played along with area adults and many young players. Two-time national champion Golden State Road Warriors wheelchair basketball team put on an exhibition game and hopes next year to bring along one or two other teams for a wheelchair tournament. They brought along an extra wheelchair and one player gave up his chair to allow some of the youngsters to try playing from wheelchairs.

In addition, eight of Christiana’s friends and former teammates, who are now in the seventh through ninth grades, tried to shoot free throws left handed, as Christiana did. Only one made a basket.

The tournament also received a lot of praise, added Maria. “We’ve gotten a fabulous response,” she said. “People have told me ‘it was just an incredible experience.’ Besides allowing us to feel good, it also provided a sense of community and allowed a reunion-like atmosphere for lots of people. People just wanted to give and give back. Their support is incredible.”

She also thanked tournament sponsors, including the Almaden Valley Athletic Club. Westfield Oakridge Shopping Center, US Technologies West, Realtors Randy and Kim Pertner, Lucile Packard Children’s Hospital at Stanford; District 10 Councilmember Nancy Pyle, PostNet and the Almaden Times Weekly.

Support for CARRA
CARRA’s mission is to “support the discovery of a cure and improved treatments for childhood arthritis and related diseases and to increase public awareness of childhood rheumatic conditions.” Because of CARRA, there are now 250 pediatric rheumatologists networked together and making other pediatricians aware of these autoimmune diseases and the consequences of the diseases.

“Our desire is to make these doctors aware of the rare diseases. If there had been more awareness of Christiana’s disease, she could have been treated earlier and might still be with us,” said Maria.

The Powery family, from left to right: Maria, Evelyn, Serena and Dwight.

But it’s not just making doctors aware of rare children’s diseases such as lupus, juvenile arthritis and sclaraderma, it’s also making other children aware of how these kids feel when they are being teased. At the second tournament, 11-year-old Dominique came and talked especially to the students there about weight gain from taking steroids, and the problems she faces with her medication and by those teasing her about the medicine’s side affects.

Christiana’s doctor also attended and during a break between games talked about the diseases and the awareness and money necessary to combat and find cures for these devastating illnesses.

The Powerys donate 100 percent of the tournament proceeds to CARRA.

But that’s not all they do. This year, the Almaden Community Center asked to partner with the Powerys and send the proceeds from its annual golf tournament to Friends of CARRA. The tournament, held in Christiana’s memory, had 77 golfers on Sept. 22.

Yet another fundraiser found Dwight, Evelyn and two of Christiana’s doctors bicycling from San Francisco to Los Angeles in the Arthritis Foundation’s California Coast Classic. This year a 10-member team rode bikes from Oct. 3-10 about 560 miles; Dwight said they took a couple of side trips in order to eat well, including a side trip to Solvang even though the shops all close at 5 p.m.

The entire group of 240 riders raised $1.1 million, while the 10 members of “Team Also Touch” rode in memory of Christiana and raised more than $30,000.

The family is planning to hold its third annual Hoops for Hope tournament again next fall. It also hopes to take 30 riders—including Maria—on the California Coast Classic all to raise money for a good cause and to remember a young lady who loved sports, especially basketball.

If you would like more information about Christiana’s life and illness, visit www.alsotouch.com or to volunteer your time or money, contact www.hoopsforhope44@yahoo.com.