The way he scoots and romps through the house, you’d never know
4-year-old Clayton Tarabanovic has a chronic kidney disease, high
blood pressure and a brittle immune system.
His Hollister family has decided to take Clayton and his wealth
of toddler energy to Minnesota in July for the 2004 U.S. Transplant
Games. To enter, people must have received a life-saving organ or
bone-marrow transplant.
The way he scoots and romps through the house, you’d never know 4-year-old Clayton Tarabanovic has a chronic kidney disease, high blood pressure and a brittle immune system.
His Hollister family has decided to take Clayton and his wealth of toddler energy to Minnesota in July for the 2004 U.S. Transplant Games. To enter, people must have received a life-saving organ or bone-marrow transplant.
Clayton got a new kidney in August 2001 because his genetic disease – autosomal recessive polycystic kidney disease (ARPKD) – began to cause internal failure. His dad, Mark Tarabanovic, donated the organ to his then 1-year-old son.
Throughout his life, Clayton won’t be allowed to take part in most physical sports, such as football and wrestling. But he can play other games without as much contact, said his mom, Denise Tarabanovic, from their Hollister home.
An expected 10,000 people will take part in the games, the largest sporting event of its type in the world. The National Kidney Foundation has sponsored it since 1990.
“It’s a great opportunity for him to meet other people who have had transplants and see what they can do,” Denise said.
The Transplant Games, this year July 27–Aug. 1, attract all ages and follows a format similar to the Olympics – with medals awarded, opening and closing ceremonies and celebrity speakers.
Clayton’s options will include swimming, track and field, badminton and maybe others, Denise said.
He’s on a Northern California team with about 50-70 others, depending on who stays or leaves before July, according to the team manager Mark Graves, who received pancreas and kidney transplants in March 2003 because of diabetic complications.
Aside from Clayton, no others from San Benito County have registered.
Most states assemble only one group, but California also has a Southern team because of its large population.
Clayton will compete in a 2- to 5-year-old age bracket. But the events for the younger kids, Denise said, are “not as structured” as those for older groups.
“It’s more of going out there and letting them run the track, or putting them in a pool and letting them swim,” Denise said of the 2- to 5-year olds.
Among the ongoing effects of the disease, Clayton must ingest an array of medication, including steroids. He’s at risk for kidney rejections, and has experienced one so far.
And the family constantly remains aware of his surroundings – “everywhere he goes” – because the drugs severely weaken his immunity, Denise said.
“He’ll fail the Olympic test because he’s on steroids,” Mark quipped.
A generation ago, most kids like Clayton didn’t make it.
Only a few years back – before modern medicine and technology turned the tide – ARPKD was largely considered fatal, Denise said. And still, the infant mortality rate is nearly 50 percent, according to documents from the ARPKD/CHF Alliance.
Sources vary on how many people it afflicts. The range is somewhere between one in 4,000 and one in 40,000.
Doctors detected a problem while Denise was pregnant with Clayton, her only child. They found cysts on his kidneys, a symptom of the disease.
Around the time of his first birthday, Clayton got sick. Removing his kidneys, which had grown to three times the size of an adult’s, was necessary to save his life.
Mark, who has the same blood type as his son, made an easy choice and donated one of his kidneys to Clayton.
For Clayton, physical signs remain – including a surgery scar, a still slightly enlarged belly and the one rejection, for which he spent three days in a hospital.
For Mark, on the other hand, there are no daily reminders of the transplant process, he said, while Clayton yanked at his arm like a puppy on a knotted rope.
“No,” Mark responded, then pointing at the kidney section of his body, “until (Clayton) jumps on me right here.”
Clayton, seemingly shy to strangers, isn’t fully aware of the Transplant Games, said Denise, who has tried to explain the trip to him.
Asked whether he has any favorite sports, Clayton merely nodded yes, as he sat on his motorized “mini Beetle.”
Telling by his bounce and stamina on the living room carpet, he’ll have no problems fitting in.
For information or to donate to the California Transplant Donor Network, call 888-570-9400 or go to www.ctdn.org.
