KC youth survives ordeal, thanks to transplant

By Melissa Hirschl

At the tender age of one, Kyrene Corridor resident Ben Sornsin turned the lives of his parents upside down and inside out.

It wasn’t from the usual havoc that toddlers typically inflict on a home but from a deadly serious illness that manifested itself literally overnight--liver damage.

Ben went from thriving toddler to comatose in just two weeks. Miraculously, he survived, thanks to a transplant done at the University of California at Los Angeles. Fortunately, Ben was at the top of a nationwide list for a transplant. Hours played a crucial role in this heartwarming story; there was a liver available in the nick of time.

“If the hospital had had to wait more than 24 hours, they would not have done the transplant, and he would have suffered severe brain damage, since the liver filters out the poisons in your body,” says Ben’s mother, Jodi.

After an emotionally agonizing six-week stay in California, Ben was on his way home, ready to resume his exuberant life. The only stipulation was the family had to go back every two weeks-- small price to pay, all agreed, for getting their son’s life back.

Today, Ben is a typical 14-year-old, happily immersed in the challenges of high school and everyday living.

The ordeal began routinely enough, when Ben came down with flu-like symptoms that were quickly attributed to a virus in his liver.

“He looked like a pumpkin,” says Sornsin, “because the virus gave him jaundice.” Two weeks later, the grim news hit: Ben desperately needed a liver transplant.

Fortunately, the family discovered a guardian angel called COTA: Children’s Organ Transplant Association, a non-profit charity dedicated to helping families pay for expenses related to a child’s life-saving transplant.

The organization also assists patients in need of bone marrow, cord blood or stem cell transplants. According to COTA, since 1985 nearly 800 families have been helped and more than $34 million has been raised for its cause.

“What’s no wonderful,” says Sornsin, is that COTA does not charge for its services. One hundred percent of all the funds raised goes to helping patients.”

According to Ben’s mom, no one would ever guess the 5 foot 10 inch student ever had a transplant; he regularly participates in sports such as swimming and baseball.

“We’re very lucky, says Jodi.

“The only thing he has to do is take medication; there are a lot of kids that have to take a lot of physical therapy every day, which Ben doesn’t.” 

“If your child needs a transplant,” says Sornsin, “COTA will bring in its marketing person, who will have a meeting with your volunteer coordinator.

“They give you much-needed support in coming up with ways to raise money, such as putting canisters in stores; we had 500 around town. We also did a garage sale with the help of neighbors that raised $6,000. After the money is raised, it is put aside for you to pay for transplant expenses.”

When Ben had his transplant 12 years ago, the family only had $100,000 worth of insurance; the bill amounted to a staggering $450,000.

COTA helped the family raise $135,000 for transportation and medical expenses.  The family paid about $10,000 out of pocket.

“If we didn’t have COTA or our insurance, we probably would have had to file bankruptcy,” says Jodi.

The family was blessed in having close friends and business associates who readily took up their cause and helped raise funds.

“A man who just happened to see a canister at a store, for example, decided on how he wanted to help. His son also had had a liver transplant. He bought a Harley-Davidson (motorcycle) and raffled it off for us, raising $45,000.”

Turf Paradise even donated a race dedicated to Ben, according to Jodi. A local Porsche club got in on the act as well by auctioning a Suns basketball.

“It’s amazing how people come out of the woodwork for something like this,” says Jodi. “One person even put a $200 check in one of the canisters. It kind of renewed our faith in mankind.”

Even with these kinds of successes, however, the need doesn’t show signs of abating.

The premier fundraising program COTA will be hosting this year is Run for Life, a walk hosted by DC Ranch in Scottsdale.

Scheduled for Sunday, April 3, the event will include 10k and 5k runs and a one-mile family fun walk.

According to organizers, the 10k course is a challenge with spectacular golf views, beautiful desert landscape and stunning vistas from the mountainside community.

“We’re hoping to have 1,000 runners and raise $25,000,” says Sornsin, who is the volunteer coordinator. “This is a huge undertaking.”

Among the five families assisting with the race are the Flavins of Tempe. Nora Flavin’s 16-year-old daughter, Darcy, is waiting to have a heart transplant; her 32-year-old brother Brandon is coordinating efforts to raise funds for her much-needed operation.

It is a particularly heart-wrenching issue for Brandon, since both his father and brother died of heart disease.

“It’s just a waiting game,” says Brandon. “Right now the cardiologist says Darcy is stable, but if he sees any decline in her condition, she will be put on the list immediately. It usually takes about three months to get a heart. The people at COTA have been great--they are like an extended family.

“I don’t know how we’d manage this whole thing without their help.”  

For information on participating in the race or contributing, contact Event Chair Wade Harris  at (602) 705-7187 or wadeandmelanie@qwest.net.

Another option to sign up for the race is to go to the website www.getsetaz.com. COTA can be reached at (1-800) 366-2602.