Bridgetown boy gets wish
7-year-old swims with dolphin, thanks to foundation's gift

Friday, June 12, 1998

BY MARIE McCAIN
The Cincinnati Enquirer

7-year-old swims with dolphin, thanks to foundation's gift

In a small lagoon on an island in the Pacific Ocean, a little boy named Jake stood in the clear blue water Wednesday and looked into the wide eyes of the dolphin floating next to him.
siniawski
Jake Siniawski frolics with Hobi at the Hilton Waikoloa.
(Tim Wright photo)
| ZOOM |

Later, hovering in a helicopter hundreds of feet above the mouth of an active volcano, he stared into the belly of the fiery beast and hoped it would erupt.

Before Wednesday, Jake Siniawski had little hope of ever seeing a dolphin or a volcano.

But thanks to the Make-A-Wish Foundation, which flew the Bridgetown second-grader and his family to Hawaii, neither experience will ever again be just the stuff of books, TV shows or the 7-year-old's unfulfilled dreams.

Born with Fanconi Anemia (FA), a rare genetic blood disorder, Jake can be cured only with a matching bone marrow transplant that so far has eluded him.

Jake's mother says a day doesn't go by that the family doesn't think about the illness and how it affects the boy. But this trip to Hawaii has given them a much-needed break.

"I got to kiss it, to walk it, and I made it do tricks," Jake said of the 10-foot gray and white dolphin named Hobi that he met Wednesday. "I wasn't afraid of it. I was excited," he said via telephone from Hawaii. "I've got the pictures to prove it."

Jake, his parents, Carol and Jim, and 2-year-old brother, Justin, left for Hawaii last week. Besides meeting dolphins and flying in a helicopter, the family hiked inside Volcano National Park along paths of hardened lava.

"It's like a huge, black rock desert," said Betsey Gordon, a Hawaii-based Make-A-Wish worker who helped coordinate the Siniawskis' trip. "Jake will see jungles and rolling grazing lands and everything in between."

Both Jim and Carol Siniawski carry recessive genes for the disease.

Each time the couple conceives, there is a 1 in 4 chance the baby will have FA. Justin does not.

Jake was the subject of a massive donor drive last summer that prompted thousands of area residents to sign up as potential bone marrow donors and increased awareness about the need for organ donation in general.

The disorder hinders bone marrow production of platelets that stop bleeding, red blood cells that give the body energy, and white blood cells, which fight infection.

"A blow to the head or the gut can kill him," Mrs. Siniawski said, adding that to ensure her son's safety, Jake wears a helmet when he's around other children.

An estimated 1,500 cases of FA have been diagnosed in the United States, and experts say the average life expectancy without a bone marrow transplant is 22 years.

To boost his bone marrow production, Jake takes several medications. Interim fixes, his mother calls them, only postpone a transplant while artificially stimulating marrow production.

Bone marrow transplants work best when all of the six vital DNA factors match, Mrs. Siniawski said.

To date, the closest match has pinpointed only five factors. Though there is a chance for a successful transplant from this donor, the Siniawski family has decided to wait for a complete match.

Founded in 1980 in Phoenix, Make-A-Wish has granted more than 50,000 wishes to terminally ill children, officials said.

Its recipients are recommended either by outside parties, such as doctors or companies, or by relatives.

Jake's parents contacted Make-A-Wish earlier this year.

Aware of his fondness for dolphins, whales and volcanoes, Mrs. Siniawski asked her son what he would want if he could have anything. "He got real quiet and thought about it for a long time. Then he said: "I want a six-out-of-six marrow donor.' " "I said: "Honey, these people are good. But I don't think they're that good.' "

She then showed him brochures featuring dolphin shows and volcano tours, and Jake settled on those.

He also wanted to snorkel in the Pacific Ocean, which the family practiced on visits to Sunlite Pool.

Big, beautiful memories

Standing in the small lagoon Wednesday, Jake stretched out an arm and Hobi the dolphin flipped out of the water.

"He feels like floating rubber and he splashed me," Jake said. "They're friendly. They're gentle. They're beautiful."

On Tuesday's snorkeling trip, Jake got an unexpected gift when the captain let him steer the boat that shuttled the Siniawskis and about 120 others to the site where the group would get in the water. "It was a pretty big boat," Jake said. "The captain said it cost a million dollars.

"All those lives were in my hands."



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