GIRL, 6, AWAITS A NEW HEART.

Byline: Bhavna Mistry Staff Writer

VALENCIA - Susan Friesen's little girl is waiting for the heart transplant that will save her life, so the mother waits in their temporary home, a cramped travel trailer parked in Valencia, where they will stay until the phone call comes.

Friesen, 6-year-old Shivan and two younger daughters are living in the borrowed quarters, away from their Santa Maria home, because they must be within an hour of UCLA Medical Center when an organ becomes available.

``It could be tonight. It could be a year from now,'' Friesen said. ``The hard part is not knowing.''

Shivan, healthy most of her young life, recently was diagnosed with dilated cardiomyopathy - a severely enlarged heart - and after a three-week stay in the hospital is awaiting a heart transplant.

``It's deceiving,'' Friesen said, watching her daughters play. ``She looks so bubbly and is so happy but inside she's so sick.''

So Friesen, Shivan and daughters Alaina, 5, and Lindsea, 3, stay in the borrowed 26-foot-long trailer, waiting for the call. Husband Ken Friesen is home with sons Glenn, 16, and David, 18, his cell phone always at hand.

Dee Gadbury, president of the SCV Newhall Optimist Club, wants to help the Friesens, and is sending out a plea to the community to help them find a larger home.

``At this time of the holidays, we want to help and see what we can do,'' Gadbury said. ``Maybe collectively we can do something.''

Doctors aren't sure whether Shivan was born with the heart defect or whether it was caused by some type of infection. It was only recently detected.

``There is some suspicion that her muscle was abnormal to begin with,'' said Dr. Juan Alejos, medical director of pediatric heart transplants at UCLA. ``But we're trying to find out how to prevent it from happening.''

When doctors first saw Shivan they were amazed at how the girl had survived with such a weakened heart.

``Her heart was barely squeezing,'' Alejos said. ``Only a little bit of her heart was putting out. She was at a high risk of death.''

Alejos said he has enjoyed watching the youngster play with a stuffed toy she received during her helicopter flight to the hospital.

``She's obviously frightened,'' Alejos said. ``But she's very cooperative. She knows that we're doing the best for her. It's a difficult situation to be in.''

It was only a month ago, on a family vacation in Sequoia National Park - a favorite family spot - that Shivan was diagnosed.

``She just kept wanting to lie on a blanket,'' Friesen said. ``She didn't want to get up.''

Friesen first thought her daughter had the flu, but when Shivan continued complaining that she was tired, she was taken for a checkup.

After an initial diagnosis of walking pneumonia, Shivan's chest X-ray was further examined and she was sent to a cardiologist.

It was there that the Friesens learned how sick their little girl really was.

``When he saw her, he said that only 7 percent of her heart was functioning,'' Friesen said. ``He said that she should be dead. He said he's always surprised when so many children look so well but are so sick.''

The cardiologist immediately ordered that the girl be hospitalized. She was carried from the doctor's office to a hospital down the street, and listed in critical condition.

Shivan was later airlifted to UCLA and placed in pediatric intensive care.

During her three-week stay in the hospital, the girl underwent intensive drug treatment to improve her heart function. When released, her heart was functioning at 26 percent of normal capacity - anything less than 55 percent is critical, doctors say.

``She was put on eight different medicines and carefully monitored,'' Friesen said. ``Each of the doses had to be very specific. Just a little bit more could have killed her.''

While hospitalized, the girl was monitored carefully.

``It was so frightening,'' Friesen said. ``She looked so peaceful but her heart was so weak.''

On Oct. 21, Shivan was sent home, but she must still continue weekly visits to have her blood checked and must continue to take numerous medications.

``This is what's keeping her alive,'' Friesen said, holding five bottles of medicine and two packages of creams. ``If her blood gets too thick, she could get blood clots. If it gets too thin she could bleed to death.''

Though sick, Shivan still plays with her sisters. Huddled together in the small temporary surroundings, the siblings play Candy Land, ride their bikes and watch a favorite video, ``Free Willy.''

Shivan is anxious to have the transplant.

``I'm ready for a new heart,'' she said. ``I like my heart because my God is in it.''

While coping with the illness, the family is also trying to cut expenses.

``We had to refinance our house,'' Friesen said. ``We don't know how long we will be in this condition.''

A woman loaned the family the trailer and a truck to transport it to Valencia, where the family has been for about a week now, paying $500 a month for rent.

``To go from a three-bedroom home to 26 feet is hard for us,'' said Friesen, mother of five. ``We're trying to make the best of our new home.

``Everything in Los Angeles was close to $1,000,'' Friesen added. ``This is all we could afford.''

But living space is the least of her worries right now. Shivan's illness never leaves her mind.

``I'm trying to remain faithful, hopeful and positive,'' Friesen said. ``I'm hoping she'll be healthy and happy like she was before.''

HOW TO HELP --Those wanting to donate to the family can contact:

Sharing Life Fund of Shivan Friesen

c/o Santa Barbara Bank and Trust

1500 South Broadway

Santa Maria, CA 93454

< --The family can be contacted on the Internet at: www.fourthstreet.org/Shivan.html

CAPTION(S):

3 photos, box

Photo:

(1 -- 2 -- color) Six-year-old Shivan Friesen, above, stands with her sisters, Alaina, 5, and Lindsea, 3, in front of the donated trailer home she's sharing with her mother Susan, left, at Valencia Travel Village, while awaiting a donor heart at UCLA Medical Center.

(3) Alaina Friesen puts on her shoes in the cramped trailer as her mother, Susan, looks on from another room.

David R. Crane/Staff Photographer

Box: How to Help (see text)