Chana Bogatz is 5 years old, and she loves cutting and pasting paper, playing with her brothers and sisters and having "Happy Birthday" sung to her.
In those ways she is a normal child, in other ways, she is not. She has never eaten food through her mouth -- only through a feeding tube inserted in her nose. Her hair is long but patchy, and her face is bloated. She is the size of a 3-year-old. She speaks in half-words, not sentences, because she has never been to school, so her vocabulary is underdeveloped. She has spent most of her short life in hospitals. And if she doesn't find a kidney, she could die.
This month, Chana's parents, Yehudis and Moredechai Bogatz, launched a citywide appeal to find someone who could donate a kidney to their daughter. Neither of them have the blood type necessary (type O) to make them potential donors, but they are hoping that someone will respond to the "Save Chana" flyers they have hung in shop windows all over the Jewish areas of Los Angeles or the savechana.org Web site they have set up, and be inspired enough to help Chana.
"If she gets a kidney, she is going to have a normal life," said Yehudis Bogatz, who moved to the United States from Israel four years ago. "She is a very smart kid even though she has had a lot of complications, [but once she has had the transplant] she will be able to go to school and learn and do things."
Chana is one of the estimated 60,000 people in the United States waiting for a kidney transplant, and one of 14,313 in the Western states. The need for kidneys has doubled in the past 10 years, according to Dr. Robert Metzger, president of the Organ Procurement and Transplantation Network. Statistically speaking, two-thirds of those in need will be on the waiting list for two to five years before a matching kidney becomes available on one of the national organ donor databases, like the United Network for Organ Sharing (UNOS). The kidneys registered on these databases generally come from cadavers.
But those wanting to bypass UNOS can attempt to find a living donor. Since a donor's remaining kidney will perform all kidney functions, there is little risk involved for the donor. There is also a greater chance that the recipient's body will accept the kidney, because there can be a better tissue match between the living donor and the recipient than there could be between a cadaver and the recipient.
The Bogatzes' attempt to find Chana a kidney is the latest chapter in her long and difficult medical history. Three weeks after she was born, she was diagnosed with a sole, malfunctioning kidney. She began dialysis when she was 3 months old, but at 10 months, the veins used for dialysis were exhausted and could no longer sustain the treatment. At that point, the Israeli hospitals could do no more for her and, on one day's notice, the Bogatzes moved with their six children -- a seventh has been born since -- to Palo Alto, Calif., so that Chana could receive treatment at Stanford Medical Center.
In 2001, she received an infant cadaver donor kidney, which was meant to be a "bridge" until a regular kidney became available. For a short while, the kidney worked, but after a year, it failed and she needed to continue dialysis once again. She was in dialysis for 20 hours a day. But eventually she lost the ability to respond to the dialysis. Last year, the Bogatzes moved to Los Angeles so that Chana could receive treatment at UCLA Medical Center.
Although her life is spent in and out of hospitals, Chana does as best she can. While on dialysis, she takes her scissors and paper and sits quietly amusing herself by cutting. She always pulls up her sleeve to show her doctors her one remaining "good" vein so they can poke it with their needles. She was -- and still is -- conscious and proud of the feeding tube in her nose, and will run to get either parent to put a new bandage on it if it starts to become loose. She also learned how to adjust the various tubes and catheters going in and out of her body, often surpassing her mother's knowledge of how to work them.
For the Bogatzes, coping with their daughter's illness has meant many changes to their lifestyle. In Israel, both Moredechai and Yehudis Bogatz worked as high school teachers. In addition, Yehudis wrote and produced plays for the school she taught at, and wrote a book titled "No Different Than You" (Feldheim) about Yehudis' sister, Shevi, who died of kidney failure one year before Chana was born.
Both parents have yet to secure gainful employment -- Moredechai Bogatz can't speak English, and even though Yehudis Bogatz did start working as a teacher, the demands on her time ferrying Chana to and from the hospital made regular employment impossible. They live in a two-bedroom house in the Fairfax neighborhood, and rely on the support of organizations like Chai Lifeline and Tomchei Shabbos to meet their needs.
Now the Bogatzes main focus is making a happy home for their children, have them love each other and be proud of Chana. They see the illness as a blessing, and they try to focus and draw strength from positive things.
"When I first heard I had a sick baby, I was crying and crying, but my goal was that my family shouldn't fall apart," Yehudis Bogatz said. "So things don't have to be perfect by me -- I don't care if the house is messy -- as long as the kids are happy and Chana is happy, and that we are all together."
For more information on Chana Bogatz, visit www.savechana.org, or call (800) 728-3254. Suitable donors must be between 18 to 45 years old, have type O blood and be in good health. There is no cost to be screened and donor's medical expenses will be fully covered.