The Shukrun family
(Clockwise from top left) Yam, Shefa, Tali and Shuki Shukrun. Photo by Ilan Assayag
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Reuters
Olympic gold medalists Jo Aleh (right) and racing partner Olivia Powrie. Photo by Reuters
Ilan Assayag
The fact that both Shefa and Yam suffer from the same disease helps them to cope, says their mom, Tali. Photo by Ilan Assayag

For the Shukrun family of Moshav Yinon, August began with one daughter competing in the summer Olympic Games and winning a gold medal. It draws to a close with a second daughter celebrating the bat mitzvah many feared she would not live to attend.

To say the least, it has been an emotional time for the Shukruns as they prepare to celebrate these two hard-won victories together as a family.

"You can say that we've been through the entire spectrum this month -- the victory of basic survival and the victory of reaching the skies," says 50-year-old Shuki Shukrun, whose daughter Jo Aleh (known as "Qesem" to her family) clinched the gold medal for New Zealand sailing in the women's 470 regatta at Weymouth Bay with her racing partner Olivia Powrie.

Aleh is the first Jewish Kiwi ever to become an Olympic gold winner and she joined Aly Raisman to become the second Jewish gold medalist at the 2012 London Olympics.

The family will reunite in Israel on Sunday, when 26-year-old Qesem arrives to attend the bat mitzvah of her half-sister, Shefa, who has spent most of her life in a very different type of uphill battle: As a baby, she was diagnosed with cystic fibrosis, a chronic disease of the lungs. She and her 10-year-old brother, Yam, both suffer from this life-threatening genetic disorder and have spent most of their young lives in and out of hospitals.

It was at her own bat mitzvah, 14 years ago, that Qesem informed her family of her Olympic dream -- and to prove she was serious, she cashed in all her bat mitzvah checks to buy her first racing boat. "The fact that she will be here at Shefa's bat mitzvah, after having won an Olympic gold medal, is very symbolic for us," says 53-year-old Tali Shukrun, Shuki's second wife and the mother of Shefa and Yam. "Qesem has been a role model and inspiration for Shefa, and I believe this will broaden Shefa's horizons as well. It also strengthens us as a family."

After David Blatt, the Israeli coach whose Russian basketball team won the bronze, Qesem was the closest Israel came to winning a medal in the 2012 Olympics and certainly the closest it came to gold. Following her win, her declaration that the gold medal "belongs to Israel" in part was perhaps one of the few bright spots in what were rather disappointing games for Israel.

Even for a Jewish family, the Shukruns have a rather complicated story. Qesem's mother, Daniella, was born in England to an Israeli father and non-Jewish mother, and she was raised in New Zealand. When she was 18, Daniella came to Israel to visit her grandmother and ended up converting and enlisting in the Israeli army. After she completed her military service, she enrolled in the Bezalel Academy of Arts and Design in Jerusalem, and it was then that she met Shuki, who had been born and raised in the southern development town of Dimona. Shuki had fought in the 1982 Lebanon War, in which he lost nine friends, and at the time was in desperate need of a break from life in Israel. What started off as a one-year trip to New Zealand to visit Daniella's family and enjoy some peace and quiet ended up lasting 23 years. Shuki and Daniella wed in New Zealand, where Qesem was born, but divorced 15 years later. In 1999, Shuki's sister in Israel wrote him that she had finally found his "soul-mate" and put him in touch by fax with her friend, Tali. A few weeks later, Tali, then 40, boarded a plane to New Zealand and ended up staying.

Shefa was born a year later, but a month after giving birth, Tali suffered a stroke, which partly incapacitated her. At the time, friends and family were so preoccupied tending to the ailing mother that they failed to notice that the baby girl was not thriving as she should. "She just cried and cried," recalls Tali, "until one day, a friend of mine said to me that it looks like she's having problems breathing. We took her to the hospital and after seven months of testing, they discovered she had CF."

The prognosis was not good, and just before Shefa was about to start kindergarten, her doctors in New Zealand recommended that she undergo lung surgery. Shuki and Tali decided to get a second opinion and were put in touch with Professor Eitan Kerem, director of the cystic fibrosis clinic at Hadassah University Hospital, Mt. Scopus. Kerem said there was no urgent need for surgery, and the Shukruns took his advice. But by then, Yam had already been born and was also diagnosed with cystic fibrosis.

"We knew we had a 50-50 chance of having another child with the disease," recounts Shuki, "but we felt that that was not a reason to prevent this child from living." The fact that both children suffer from the same disease, adds Tali, makes it easier in a certain sense for each of them to cope.

The Shukruns eventually decided that their children would receive better care in Israel. "Before the children were born, I used to go back to Israel every year to visit friends and family," says Shuki. "But once they were born, we couldn't fly with them because of the disease, so there was a period of seven years in which we didn't see anyone, and we were very lonely."

In New Zealand, Tali recalls, the family was told that Shefa would probably not live to bat mitzvah age. "That was my motivation to come back to Israel," she says. "We understood that the doctors here saw things differently. Dr. Kerem, unlike many others, is not afraid of this disease."

Since their move back in March 2007, says Tali, the children have done as well as can be expected. They go to school most days and partake in extra-curricular activities like other children their age. Shefa, not to be outdone by her older sister, is a member of the local gymnastics team, and her more musically inclined younger brother plays the drums and keyboards.

As Shuki and Yam return from a trip to the barber, crossing off yet another item on their last-minute to-do list before the bat mitzvah, a friend from a nearby moshav pops in. A high-school teacher and part-time poet, he has come to offer his services in helping Shefa compose her bat mitvah speech. This particular speech is even more challenging than most, as Shefa has insisted that no mention be made whatsoever about the illness that has cast a shadow over her entire life. She is leaving that to Kerem, her doctor, whom she has not only invited to the celebration but has also asked to deliver the opening blessings.

Kerem will probably have to share the spotlight, though, with another guest of honor -- the family's very own Olympic gold medalist, whose presence is always palpable in the Shukrun home despite her physical absence. Pictures that Qesem drew as a child – she got her artistic genes from her mother -- decorate the walls of the family's modest home on this small moshav near Kiryat Malakhi, still home to the descendants of many of the original immigrants from Yemen who founded it in the 1950s.

Qesem's passion for sailing, her father says, began at a very young age. "Her first two words were 'water boat.' Then in 1995, when she was 9 years old, she watched the America's Cup on television, and it was the first time that New Zealand defeated America. At the time, I was in Israel, and she called me very excited and said she wanted to learn how to sail."

It is the same determination to win that Qesem brought with her to sailing that the Shukrun family brings to its battle with cystic fibrosis, says Tali. "It's a disease with no end in sight," she says. "It's like running a marathon -- you can't say I don't have any strength left or I'm too tired. You just have to keep going. The good thing is that like Qesem, our other two children have also inherited Shuki's very strong genes."