Story of a heart

Story of a heart

November 16, 2009 22:08
gerry and rachel casey 248.88

gerry and rachel casey 248.88. (photo credit: )

The night I meet with Gerry and Theresa Casey, Jerusalem is enjoying its first wintry weather of the year. However, for the natives of Sligo in the northwest of Ireland, the storm brewing outside is reminiscent of the type of climate they have tried to escape this past year to give their little girl Rachel, born with Down's syndrome and serious heart defects, a better quality of life. "We were told by doctors in Ireland that a warm climate could increase Rachel's life expectancy for up to five years," says Gerry, 40, who officially arrived here with Theresa, Rachel and the couple's three older children - Sean, nine, Emma, seven, and Louisa, five - in December. Looking lovingly at his two-and-a-half-year-old daughter as she mischievously makes her way around the family's living room, the doting father adds proudly: "I really think it has worked, because today she stood up for the first time without holding on." While this milestone might seem like only one small step for a child struggling with life-threatening health complications, for the Casey family it is the culmination of a year filled with great progress, adventure and a little bit of Irish luck. The progress in Rachel's health and physical achievements was made possible by heart surgery performed at the Schneider Children's Medical Center for Israel in Petah Tikva and through a variety of therapeutic treatments and support she received at the Jerusalem-based Shalva Association for Mentally and Physically Challenged Children. The adventure came in the form of the family's unlikely cultural experiences this year and its daring travel across the entire region. The luck part stems primarily from Gerry's work. A captain in the Irish Defense Forces, he is one of 11 Irish army officers posted to the Middle East as part of a 153-strong multinational United Nations Truce Supervision Organization (UNTSO) peacekeeping mission based in five countries (Lebanon, Syria, Egypt, Jordan and Israel) for observation purposes under the 1948 international agreement. "After Rachel's last surgery [in Ireland] she was very sick; our doctor had not been able to close all the large holes in her heart," Gerry explains. "Our physician, Dr. Kevin Walsh, recommended that we bring Rachel to Israel, not only because the warmer climate would be very good for her, but also because he said she should see a former student of his, Dr. Elhanan Bruckheimer [now a world-renowned pediatric cardiac consultant], at Schneider." The family was told that it was the last window of opportunity for doctors to close the larger holes in Rachel's heart, which has been described by some in the medical field as being like a "Swiss cheese." Gerry and Theresa explain that such a procedure was aimed at helping to reduce the pressure from her heart on her lungs, which causes constant respiratory problems and in turn enables Rachel to live more comfortably. "After receiving the news, and due for overseas deployment, I volunteered for UNTSO and asked if there was any chance of being posted to Israel," recalls Gerry, who has been on several tours of duty in other countries of conflict, including Bosnia and Lebanon. "The Irish Defense Forces selected me to serve and I feel very lucky that the army showed such compassion to look after an employee like this. "This is the only family-accompanied mission available for Irish officers and the majority of officers deployed from the other 22 troop-contributing countries in this mission." ALTHOUGH THE family arrived here in the midst of Operation Cast Lead, their adventures in Israel began a few months earlier. "I arrived in Israel in July for work and to set things up for the family," says Gerry. "At that time I was stationed in the Golan Heights and every weekend would travel to a different place to find out if Israel had the appropriate therapies for Rachel." One weekend, Gerry found himself in Jerusalem. After initially visiting Hadassah-University Medical Center on Mount Scopus, he was directed by staff there to seek out Shalva in the haredi neighborhood of Har Nof. "I took a taxi to the address they gave me and told it to come back in 40 minutes," remembers Gerry. "Then I attempted to explain to the guard who I was and what I needed." At first Gerry could not find anyone to talk to, and when he did eventually find a staff member who spoke English, he was told that Shalva was at full capacity and could accept no more children. As a deflated Gerry sat down in Shalva's courtyard to wait for his ride, a visiting tourist group came out of the building and asked him to take a photograph. He agreed; an act that would change his luck and that of his family. Among the tour group was Shalva spokeswoman Andrea Simantov, an American-born veteran olah, who agreed to hear Gerry's story and put him in touch with Shalva owner and founder, Kalman Samuels. "As a parent of a challenged child, who many years ago went through the challenges of trying to find the best services for my child, it is vital to me to try to help every child and parent who turns to us as quickly as possible, without red tape," explains Samuels of the decision to help the Casey family. "Our professional staff at the 'Me and My Mommy' program decided quickly that they could help Rachel and how to do so." Samuels set up Shalva in 1990 with his wife, Malka, some 13 years after their son Yossi was rendered blind, deaf and acutely hyperactive after a routine DPT vaccination. The family had struggled to find the support needed to take care of Yossi at home, and it was these experiences that spurred Samuels to create an organization for disabled children and their parents. Today, the organization, which receives 25 percent of its funding from the government and the rest from private donations made abroad, helps roughly 450 children from birth to 35 years of age via varied programs, which not only care for the child but also empower the entire family. All services provided by Shalva are free. "I only have Ireland to compare it with and obviously have very little experience at being the mother of a child with special needs, but the type and range of therapies offered at Shalva are amazing," observes Theresa, who throughout the interview has been keeping a watchful eye on her daughter as she pulls books and other items off the coffee table. "I am constantly surprised that Ireland, which is considered one of the most economically developed countries in Europe, has almost no services for Down's syndrome children before the age of two." Theresa also says that for religious reasons most people in Ireland do not screen for such disabilities during pregnancy and that Rachel's condition was a complete shock. "We already had three healthy children and no family history of Down's syndrome," she says. "It was a complete shock to be given this news 15 minutes after the birth of our child; it is really something that we had never thought could happen to us." AS WELL as offering the Casey family practical tips and support during their year here, Shalva also offered them an insight into a world that most diplomatic expatriates living here rarely see. With Gerry working mainly opposite Israeli or Palestinian military personnel and the other three children studying in the private Anglican School in Jerusalem, the family potentially had very little opportunity to socialize with Israelis, especially from the haredi community, or see a more positive side of Israel. "We would never have had the need to visit a religious, Orthodox area of Jerusalem," observes Gerry. "Thanks to Shalva that world was opened up to us. "At first I thought they would treat us differently because we are Roman Catholic or because I work for the UN, which is not a popular organization here, but I quickly realized that everyone is a human being and that is all that matters." To highlight the human side they've experienced through their daughter, Gerry and Theresa organized a special event at Shalva recently to introduce members of the international diplomatic community to the softer, more compassionate side of Israel. Among the VIPs who attended were Irish Ambassador Breifne O'Reilly, Irish Representative to the Palestinian Authority James Carroll and UNTSO Deputy Chief of Staff Col. Tim Rotonen from Finland. "Israel gets such bad press all the time," says Gerry. "We wanted them all to see a different side." As for the Caseys themselves, the family has maximized its time here by traveling the length and breadth of the country and even venturing into its neighbors, thanks to Gerry's status with the UN. In a laid-back tone Theresa describes how, between Rachel's surgeries and treatments, the family spent time vacationing in Abu Dhabi, touring Galilee, and last month visited the pyramids in Egypt. "It's really been an adventure for all of us, and we would love to stay for another six months, especially because the weather has been so good for Rachel," she says, explaining that the family is set to return to Ireland in January. As well as being extremely beneficial to Rachel for medical reasons, Theresa says it has also been an enriching experience for her other children. "I keep telling them how lucky they are to be here and have this experience," she says, adding that despite the heartbreak and upheaval the whole family has gone through, "life only seems hard on the surface. "Honestly, we did not do this much traveling in our 20s or even before Rachel was born. It's only since Rachel was born that we would have done something like this. Her being here has given us the push we needed not to take life for granted, and it has made us realize how fragile and short it can all be."

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