Living with Down syndrome in Israel
Large percentage of kids born with genetic disorder in Jewish state belong to ultra-Orthodox community. Yad Al HaLev association created to support families, give children special attention
For many families, it is a difficult journey of acceptance and of learning how to cope and be happy with the cards that were handed to them. For this reason, Jewish organizations were created here in order to assist.
Video courtesy of jn1.tv
"When you get the news that you have a Down syndrome child, a few things happen," says Liba Rozenbaum, a mother to a child with Down syndrome. "First of all, you can't believe, you're in total shock and denial. It's something sort of like a bomb that fell on your head.
"Somehow Yad Al HaLev knows how to get to families and to give them the support that they initially need, to receive the news and to know what to do with the new life's situation."
Yehuda Heber, founder and chairman of the Yad Al HaLev association, says that when his daughter was born 18 years ago, "we contacted several other families in the Jerusalem area, in the center area, and we started to come together as parents so that we can act together.
"At a certain stage, we saw that we have to open an organized association, or an organization, in order to have the power together with all the other parents to act and promote the many needs of the children, and the families in general."
There were times in history when children with Down syndrome were considered flawed and treated as abnormal. But today in the ultra-Orthodox world, those kinds of misconceptions no longer exist.
"Today in haredi sector there is even respect for these children," says Liba Rozenbaum. "We have a very, very big rabbi by the name of Hazon Ish, and when a Down child came into the room, he stood up for him because he said: 'This is a very special kind of soul.' So not only is there awareness, there is also a respect."
'I'm so thankful to God for this precious person'
Every year about 120 kids are born with Down syndrome in Israel, with a large percentage of them belonging to the ultra-Orthodox community. As in many other religious communities, abortions are frowned upon in the Jewish faith.
"We don't believe in abortions, if it could be avoided. We believe it's murder," explains Rozenbaum. "So this is the place that Yad Al HaLev plays in the haredi sector, when a family has a child like this and there is a support group and there's somebody to talk to."
Sarah Lorincz is another mother to a child with Down syndrome. "I had no problem taking the child home and loving him, which wasn't the case with many other children," she says. "Nevertheless, you need a lot a lot physical strength and emotional strength."
"I've been there, my son is 21 years old," says Rozenbaum. "I couldn't see myself living today without him, even though once it was like the blackest thing that could have happened to me, only on my enemies.
"Today, I'm so thankful to God to have this precious, precious person who lives in my house; I have so much love for him. And the parents who are informed that such a child is being born into their home, people like us, from all our heart tell them we love them."
During the summer in Israel, camps for children with special needs are put together in order to allow the kids to have fun and feel like all the others around them.
"It's very important for a child with special needs to be among equals, to be in a place where he is loved and fed," says Hani Shraiber, who also has a child with Down syndrome.
The activities are often designated for the parents, just the same as for their children.
"This holiday that we're having now is very important," says Sarah Lorincz. "It gives mothers the ability to speak to one another, to exchange information, to exchange ideas, to give strength to each other, which is also very important."
These days, there are tests to detect Down syndrome, but for the many ultra-Orthodox families, who often do not take the tests and even once they do – choose to have the baby anyhow, these types of associations are vital.
