Determined to Live
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Determined to Live

Determined to Live

How the Jewish people came together to save a special woman.

by

Unfortunately, sometimes people have to learn how much the heart and head can endure. For Leah Golomb, a 50-year-old Mevo Modi'in resident who has suffered through 30 years of ever-increasing pain, realizing that we can endure the unendurable is one of the things that keeps her going.

Leah was born in New Jersey to a father already diagnosed with polycystic kidney disease (PKD), an inherited kidney disorder, which enlarges the kidneys and interferes with their function because of multiple cysts on the kidneys. As soon as his children were born he became a newly observant Jew and prayed to God that he would live long enough to see his children grow; he died 14 years later.

"I felt like I had been given my death sentence."

PKD is an inherited disorder (with autosomal dominant inheritance -- if one parent carries the gene, 50% of the children will develop the disorder). Hence, within five years of her father's death, Leah, only 19 years old, was diagnosed with the disorder.

"I started suffering from lower back pain and I was referred to a specialist who did a series of tests and diagnosed me with the disease," Leah says. PKD is slowly progressive and eventually results in end-stage kidney failure. Knowing this, "I felt like I had been given my death sentence."

The fear that her life could be cut short at any moment did not lead Leah to a deep depression. She was also unwilling to accept her fate and decided she would do all she could to survive.

"I went on a macrobiotic diet. I started acupuncture…anything I could to strengthen my body and strengthen my resolve," she says. "I decided this disease was not going to control my life, but that I was going to control it. The disease pushed me to become even more physically active."

At age 20, Leah moved to Israel, where she quickly met her husband to be, Michael. When she told him about the PKD, "He was so understanding. He said to me, 'The Almighty can do anything.' He said God could heal me, even cure me -- that I should see this as part of my unique task in this world."

So Leah and Michael were married and had six children (three of which are triplets and all of whom have PKD). Michael says he did not fear the fact there was a 50 percent chance of their being afflicted with PKD, and despite their being unwell he is still glad he and Leah chose to conceive.

"I believed then and I believe now that God can cure anything," Michael explains. "I trust in God they will be healed… I knew these children had to come into the world. God didn't promise us fixed children. What my children have is part of the tikkun [fixing] of their souls."

The children, ranging in age from 16 to 24, are all on medication to slow the progress of the PKD, and are all doing well.

The first two years of marriage Leah felt stronger than ever. However, after her second child, Leah began to feel the ache of the disorder. "As I had children, I could see the disease was taking a toll on my body and I started to feel I wasn't like other people."

As the pain amplified, Leah fought harder. "Sometimes I wanted to crawl into a ball and cry," she says of the throbbing caused by her ever-enlarging kidneys. "But when you are the Mommy, you can't do that."

And Leah serves as "Mommy" to more than her children. "Leah is a wonder woman. She truly cares about everyone around her and makes them -- and me -- feel so special," Michael says of his wife, who for the last 20 years has led Shabbat activities, story telling, classes on Jewish spirituality and Bat Mitzvah preparation courses, in addition to serving as her community's mikvah [ritual bath] lady. Leah has balanced these activities and her family with training children throughout the country to swim, teaching classes at a number of women's seminaries and offering courses in private homes.

"She truly cares for the goodness of the moment. Leah has always been the organizer of the family -- cooking incredible meals and keeping the house running. She makes sure everyone has what they need and is always finding the time to read to this one, talk with that one, share a secret with another," her husband says. "Six kids, including triplets, is a handful for anyone, but Leah seemed to take it in stride and keep the energy flowing."

"Leah is the kind of person that even when she is suffering in pain, she still follows her dreams," says Miriam Orrelle, Leah's close friend. "She is caring, wise and full of life, someone who always has good advice."

Leah didn't tell many people about her disorder, even when the disease sped up two-and-a-half years ago and Leah's kidneys went into greater failure, making the prospect of dialysis and an early death ever nearer. Only her very close friends were aware of her suffering, and even they did not know the extent.

"The truth is that I'm not sure I knew how sick I was. I just got worse and worse until I never felt well anymore. It got to where I needed to rest if I walked up the stairs … I guess I was running on empty."

TRANSPLANT DESPERATELY NEEDED

By November of 2002, Leah was struck with the intensity of the PKD. She could no longer work and Leah knew a transplant was the only option. Her and Michael launched an international search for a donor. Close friends spread the word, but an appropriate match could not be found and Leah became frantic. Leah and her family began to see the tragic end they always feared in sight.

The Golombs had only 10 days to raise at least $100,000 for the operation.

Suddenly, in December 2002, Leah's fervent prayers started to come true. Her son, Maoz, who was serving in the Israeli Air Force, met with a specialist in the army because he wasn't feeling well due to PKD. The doctor suggested ways to contact agents who could help Leah find a donor. Within three weeks a match was found.

A silver lining to a dense, dark cloud appeared. The donor, however, was from Romania, the operation was to be conducted in South Africa and the Golombs had only 10 days to raise at least $100,000 in order for the operation to ensue! For the first time in her life, Leah opened up and told all her friends of her predicament. This was her chance to recover -- to see her children's children -- and it had to happen.

"It was a hard decision to go public about my suffering -- to ask for money is really outside my usual mode of behavior, but I was desperate," Leah explains. "There comes a point when you are just so desperate you have to let your pride go."

The process began with one e-mail. Naomi Landesman, Orrelle's mother and one of Leah's best friends, sent a short letter about Leah's situation to everyone she could think of, telling them if they knew Leah to send out personalized letters of their own.

"I think everyone just called the people who were closest to him or her. People talked about it in their shuls and communities. The Internet was the biggest means of communication; we e-mailed letters to each other so that anyone who had something to write about Leah could do so and then we e-mailed those letters to different people in Israel and abroad," Orrelle explains.

Laya Levine, from Teaneck, New Jersey, a friend of Leah's since high school, kicked off another fundraising project. "When I got word that Leah needed a transplant, it was time to mobilize. I knew I was just one little piece in the big scheme of things, but I was going to do everything in my power and the rest would be up to God.

"I decided the best thing for me to do was to contact people who knew Leah, because anyone who ever knew her loved her. I began calling all the Shlomo chevre [followers of Rabbi Shlomo Carlebach, for which Leah's Israeli community is named] I knew and I told them to do the same. I contacted the rabbi from our hometown of Elizabeth, New Jersey and then I sent all the people on the JEC [Jewish Education Center, the central school and synagogue of the traditional Elizabeth community] mailing list within three or four grades of Leah a letter about my dear friend's predicament," Levine explains. Levine's daughter asked the girls she was inviting to her Bat Mitzvah to bring financial gifts for Leah.

"I would call one classmate and speak to his secretary and then I would get a phone call 15 minutes later from him on his vacation in Arizona. He was ready to help. Another person responded from his vacation in Europe," Levine said, "and many others appealed to their local Jewish communities."

Soon ads to raise money for Leah's kidney transplant were all over the web and newspapers. And the money came pouring in; from the Old City of Jerusalem to small towns in America.

"I am still flabbergasted by the outpouring of money and chesed."

"It was amazing," Orrelle says. "The way people came together from different places and then contacted more people… There was even help from many complete strangers. These people heard her story and were moved by the need to come together and save a Jewish life."

"I am still flabbergasted by the outpouring of money and chesed [kindness]," Leah says. People sent money to my house -- people that didn't even know me! I felt like Am Yisrael [the nation of Israel] came together to hold me, to give me the strength and the means to get better. I can't grasp why I was privileged to be the recipient of such love…"

Ten days after the campaign began, Leah was in South Africa. The operation was successful, albeit only the first step to a lengthy recovery. A few weeks after the transplant Leah returned to Israel, with money still pouring in to support her and her family during the recovery process and the subsequent operation Leah will need to remove her left kidney, which is uncomfortably overgrown and potentially toxic.

She has developed diabetes, a result of the immuno-suppressant drugs, and she will always have to take medications, monitor her diet and exercise, but she is much healthier and happier than she was before. The miracle operation saved her life, her spirit and her family.

"I thank God everyday for her," Michael says, "and for the second chance at health and happiness He has given her."

Leah glows thinking about the prospect of being well. "It has been years since I've been able to say I feel the true potential to be healthy," she says.

She says she often thinks about why she was "blessed to be given another chance at life."

"I want to thank everyone for being a part of Am Yisrael. I want to thank the Almighty. I want people to know," Leah says, "that God answers our prayers. Maybe He doesn't always do it the way we expect, but He is always listening. I pray that everyone who needs help should find it."

Published: July 5, 2003


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Visitor Comments: 16

(16) Mandy, August 30, 2012 8:27 PM

I remember the fundraising campaign. I had been to a series of shiurim by Leah, and was inspired to donate. However, a few months later my cheque was returned with a note saying that enough money had been raised, and my donation wasn't needed. I was very impressed. May Hashem bless you with continued health, strength and lots of light.

(15) Vickie, April 22, 2012 5:10 PM

Medication to slow the progress of PKD?

I also have PKD although my liver is in worse shape than my kidneys. This is the first I've heard of a medication to slow the progress. Neither of my sons have been diagnosed (they live in the US and have no medical insurance), but I"m sure my older son also has the disease as he's 31 and has had high blood pressure for years. Where can I get information about this medication?

(14) Marci Rapp, MarSea Modest Swimwear, May 30, 2011 9:40 PM

Leah Golomb inspired me to donate my kidney

Through Kidneymitzvah.com and the inspiration of Leah Golomb (my shiur lady for 4 years) and Lori Palatnik (former Torontonian), I became a match to a 48 year old mother of 6 in Israel. It's been 8 months of testing and delays :( but after a round of drug therapy to eliminate any antibodies that might reject my kidney, we hopefully IY"H will be transplanting after Shavuot.

(13) , January 29, 2010 10:23 PM

I am a Mother with PKD. I live a helathy life and keep my blood pressure in line, exercise and keep the syptoms minimal. My kids are 12 and 9 and do not even know I suffer from this. People with PKD can live normal healthy lives then continue after a transplant. Pain is in the mind of the beholder. Think positive and healthy and you will survive.

(12) sharon chwatuk, August 24, 2008 2:54 PM

could I be of help?

I Doven with tears and would like to include them in my prayers. I have rheumatoid arthritis and am taking the path of not taking the low dose chemo drugs which are usually prescribed to lower the overactive immune system.

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