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Carrie and Martin Kuba say their daughter Isabella has been given life twice: once when she was born 15 months ago and again last month, when she underwent a kidney transplant to treat a rare genetic disorder.
Isabella--or Bella, as she's known to her family--was born with congenital nephrotic syndrome, a rare disorder caused by the protein nephrin. Children with the disorder have abnormal levels of nephrin, which leads to kidney failure.
Bella had her kidneys removed four months ago and was on dialysis until she received the transplant. Now, besides dealing with a plethora of postoperative complications that have arisen since Isabella's June 20 surgery, the Kubas are also trying to ensure that their daughter will be able to afford the medical care she'll need for the rest of her life.
"When she's 30 to 35, she'll need [another] new kidney," says Carrie Kuba, who grew up in Sunnyvale. "She'll be on anti-rejection medication for the rest of her life, and she's not going to be the best candidate for [health] insurance."
The Kubas turned to the Children's Organ Transplant Association, a national nonprofit group that helps families raise money for transplant-related expenses. Through the association, the Kubas hope to raise $60,000, most of which is earmarked for a fund Bella can access later in life.
The Kubas say they're grateful for the help they've already received from family, friends and even strangers. The former Cupertino residents now live in Bend, Ore.; when they returned to the South Bay for Bella's surgery at the Lucile Packard Children's Hospital in Stanford, friends loaned them a house to stay in and a car to drive. Carrie Kuba's parents, who still live in Sunnyvale, have been helping with their granddaughter's postoperative care.
"We've been amazed at how people have come around us and helped us," Martin Kuba says.
"We've had people bring us meals," his wife says. "A nurse in Bend got her friends together and adopted our family for Christmas. My parents' neighbors in Sunnyvale donated clothes and toys to Bella. Some people have filled a need before we even knew we needed it."
Martin was able to donate a kidney. To help Bella accommodate the adult-sized organ, surgeons placed the kidney in her abdomen.
Compatible donors must share at least three of six genetic markers with the patient. Martin Kuba and his daughter have four markers in common.
"I definitely feel a special connection with her," he says. "When a father donates an organ, you go through this special experience because you feel like you can actually give life."
The dialysis that has kept Bella alive has also slowed her overall physical development.
"She's 15 months and she hasn't crawled or talked," Martin Kuba says.
The disorder has also rendered Bella extremely immunodeficient, forcing her parents to limit her contact with the outside world for fear of her contracting an infection or illness.
"She's never been to a playground or a playgroup. One of us has to be with her all the time, and a limited number of people can be around us," Carrie Kuba says.
On doctor's orders, the Kubas are staying at the hospital until late September or early October. After that, they'll travel back to the South Bay every three to four months to have Bella tested for signs of kidney rejection.
Tax-deductible donations to Bella Kuba's Children's Organ Transplant Association account can be made at any Wells Fargo branch using account number 7089386101 or mailed to the 2501 COTA Drive, Bloomington, IN 47403. Checks or money orders should be made payable to "COTA for Bella K." Secure credit card donations are also accepted online at www.cota.org. Individuals and groups interested in more information can contact Lisa Otsuka at 408.746.3086.
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