July 30, 2008
Israeli teens with Turner’s find hope and kinship in Malibu
Turner syndrome is one of the most common endocrine disorders, affecting approximately 1 in 2,500 females worldwide, according to the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health. The syndrome is caused by the absence of one X chromosome or the presence of one abnormal X chromosome and is manifested in various ways. Those affected are unusually short, infertile and may have a variety of other physical attributes. Quite often, the syndrome is not discovered until a girl reaches puberty, when normal female sexual development fails to occur.
About 10 years ago, Daley was collaborating with a diabetes and endocrinology center in Israel to build a mentoring program for children with diabetes similar to one she'd created in Los Angeles. In the process, she discovered that Israel had next to no support services for girls with Turner syndrome, which hit her because she had recently founded a summer camp in Los Angeles for girls with the chromosomal abnormality. Since that time, her dream has been to bring Israeli girls to the camp -- the only one of its kind in the United States -- and hopefully provide a model for a similar program in Israel.
Ronny Manor, 16, is one of the two Israeli girls who came to the Children's Hospital camp, run on the campus of Pepperdine University. Daley raised the money to bring the girls through private donors and a grant from the Jewish Community Foundation, and found them through the Institute for Endocrinology and Diabetes at Schneider Children's Medical Center in Petah Tikva, Israel -- the same center she had worked with years before. Daley was looking for girls between the ages of 12 and 19 who were independent enough to travel without their parents, could converse in English and would benefit significantly from the experience.
Manor is bright and curious, and loves to sing and act. Her mother began suspecting something was different because she was much shorter than her classmates. Doctors initially could not find an explanation for the girl's stunted growth, but eventually, when Manor was 11, she was referred to Dr. Moshe Phillip at Schneider's.
"From the first glance, he recognized that I had Turner syndrome," Manor said recently, as she sat outside a small Pepperdine theater, where she and 20 other girls with Turner's were rehearsing monologues they had written describing significant moments in their lives.
"At the beginning, I didn't understand what that meant to have a syndrome," Manor said, speaking in Hebrew. "Until then, I just thought of myself as a short girl, and then all of a sudden I have a disorder that I have to live with the rest of my life. It was terrifying and confusing."
Ronny immediately started researching Turner's online. She found an Israeli forum and began to correspond with others with the disorder, eager to find out more. The others on the forum were women in their 20s and 30s, initially a disappointment for the young girl, who was looking for peers dealing with the same disorder.
But meeting with some of them made Manor realize that connecting with adults could give her something just as encouraging as solidarity -- an inspiring glimpse into her future.
"I found out that these women are normal. They have lives, they have friends and careers and husbands," Manor said. "It gave me such hope and strength."
Not long after she found this outlet, the forum was closed down due to lack of participation. In Israel, there is a very little awareness of the syndrome and no organized programs for people with Turner's, so the opportunity to attend a weeklong camp designed for young girls with the disorder seemed a dream come true for Manor.
Daley founded the Turner syndrome summer camp in 1994, with the sponsorship of a division of Children's Hospital -- the USC Center for Excellence in Developmental Disabilities, headed by Dr. Robert Jacobs. The camp is the only one of its kind addressing the unique abilities and needs of girls with Turner's. Each year, approximately 60 adolescent girls from around the United States travel to Malibu to take part in activities that include theater workshops, art sessions, hikes, team-building games, trips to theater performances, nutrition counseling and cooking classes.
Manor was particularly excited about a makeover session, scheduled for the last day of the camp. The girls were to be treated to a day of pampering, with haircuts and makeup at the Vidal Sassoon Academy in Santa Monica and manicures by the camp staff.
"Everything here is done with so much love," said Moran Rudnicki, the counselor who accompanied the two girls from Israel at the request of their parents.
Rudnicki, who works with Dr. Phillip at the diabetes and endocrinology clinic in Israel, had had no previous experience with Turner's syndrome and was asked to join the girls at the last minute when the designated chaperone was unable to come.
Awed by the amount of support and encouragement the camp offers the participants and frustrated at the lack of an equivalent organization in Israel, Rudnicki says she is inspired to start pushing for similar programs when she returns home. Rudnicki and Daley, who also arranged for the two girls to be hosted by Jewish families in Los Angeles for a week after camp was over, expressed the hope that more girls from Israel will be able to attend the camp in future years.
"The girls come here to get information that they're not getting elsewhere, not from their doctors or their parents," said Jessica Nevin, 24, one of the counselors -- all of whom have Turner's syndrome and play an instrumental role in helping campers cope with the challenges of Turner's. "It's only one week, but friendships are built and lasting connections are made, which is what they really need."
At the camp, Manor finally found what she had been searching for on the Internet: A resource she will be able to turn to with her endless thirst for knowledge, a group of girls her age whom she can relate to and a place where she feels comfortable with who she is.
"For a moment here," she said, "I forgot that we all have Turner's."
For more information, visit http://www.turnersyndrome.org, e-mail firstname.lastname@example.org or call (323) 361-2490