Corben the triumphant: 7-year-old bouncing back in the year since kidney transplant
As his name was called for a special award at Rockvale Elementary, Corben Sinthavong stepped away from his walker and took his first steps unassisted. Although his gait was slow and cautious, he made his way across the stage alone.
This milestone is one his mother, Elisabeth Sinthavong, recalls as a cherished memory. It was a triumph the family celebrated.
However, one of the hardest moments in the family’s shared memory was learning that Corben would need a kidney transplant, and fast.
“The kidney failure was the hardest for me,” Elisabeth says. “It progressed quickly.”
Corben, now 7, faced obstacles even before he was born. His parents learned that Corben had a cleft lip and palate and kidney problems.
“We knew when I was pregnant that he had some issues,” Elisabeth says. “After he was born, it still took months to do tests and put puzzle pieces together.”
At six months old, Corben received a diagnosis of Joubert Syndrome, a rare genetic disorder that manifests through decreased muscle tone, difficulty with coordination, abnormal eye movements and breathing patterns, and cognitive impairment.
It is caused by an underdevelopment of the cerebellar vermis and other portions of the brain. This produces a dysfunction in the cilium functions of the brain, which control the eyes’ ability to see light, the nose to smell, and fluid flow to the kidneys and liver.
“This is not something that is race or gender specific,” says Elisabeth. She had married her high school sweetheart, Johnny, and neither had any inclination they could be carriers for a genetic disorder that affects approximately 1 in 200,000.
“Most of the doctors don’t know; they’ve never seen it before,” she says. “There are only six families in Tennessee who have it.”
Elisabeth found strength in a Facebook group comprised of families who were looking for information on the same disorder.
“A group of moms came together to do research. We have conferences. It’s great to be on Facebook because we can share. It’s like, ‘Hey, my kid is doing that,'” she said.
In 2009 Corben was diagnosed with kidney disease and the search for a donor began.
“It’s hard. It was rough,” says Johnny Sinthavong, Corben’s father. “When you look ahead, you don’t know what’s going to happen, for him, for the family.”
Immediately Corben had to change his diet. The only problem was, most diets for kidney disease patients are for adults, not young children.
“There was stuff on that list that even I wouldn’t eat,” Johnny says. “How do you expect a child to?”
His diet limited and combined with the kidney disease, Corben stopped growing. He grew thin. He was going to need a new kidney soon.
Fortunately, both parents were matches, and Johnny gave his son one of his kidneys. Even with having a family member with an available kidney, ready and willing to donate, the process took six months before Corben received his transplant.
Corben’s school, Rockvale Elementary, was extremely supportive, according to Elisabeth.
“They have been amazing,” she says. “I’m more and more convinced that it was the right decision for him to go there.”
Corben, who has grown four inches since his surgery Nov. 30, 2011, is in both special education and inclusion classes.
“He’s pretty sociable,” Elisabeth says. “He loves his iPad. He loves hippotherapy (riding and working with horses), and he loves to go to church.”
“It never occurred to him that he would have any issues,” Johnny says.
Rockvale Elementary staff created a fundraising website, Coins for Corben, to help with medical expenses, which beyond the kidney transplant for both Corben and his father, includes monthly checkups and blood work, daily medication, and even a G-tube, which helps Corben get enough liquids — a necessity because he received an adult kidney.
Learning of Corben and his family, Oakland Middle School donated proceeds from tickets and concessions from its Jan. 17 basketball game against Rockvale Middle School to the fundraising cause.
“I never even met the coach. It’s amazing that people would be willing to help a stranger,” Elisabeth says.
The fundraising continues. A website has been set up at COTA.donorpages.com/PatientOnlineDonation/COTAforCorbenS/ where donations can be made to make up for the more than $50,000 needed.
“The average life of a kidney is 10 years. We don’t know if it will be one year or 20 years, but it is very likely he will need another one,” Elisabeth says.
Even with that future expense hanging in the balance, the family has made sacrifices on Corben’s therapies because money is tight.
“We can’t afford all of the therapy he needs: speech, physical, occupational. That’s why the hippotherapy is only a summer thing,” Elisabeth says.
“We’ve had to cut that short,” Johnny adds.
“A transplant is a treatment for his disorder, not a cure,” Elisabeth says.
For now Corben is growing and developing, making milestones for his mother to remember, being a big brother to 4-year-old Cowen and singing in church. He is making friends in his classes at Rockvale Elementary and playing communication and learning games on the iPad.
“You have to take it one day at a time,” Johnny says.
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