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Tuesday, January 06, 2004

Letter from Israel

Naomi Ragen

About four years ago, I had a lecture in Haifa. Now, I don't drive (long story) and so they sent a driver to take me and bring me back. It's about a two hour drive each way, so you get to talking.

My driver was a young Israeli, a handsome man with dark hair. We exchanged pleasantries on the way there, but on the way back, he suddenly turned to me and said: "You know, looking at me, you would never be able to tell that I'm Job."

I looked at him, astonished. And then he told me truly one of the most heartbreaking and incredible stories I've ever heard.

When his first son was born he didn't start walking until he was eighteen months. He was a cute little fellow, so they weren't worried, not really. But then other things started to go wrong. His growth was very slow, for example. But doctors were stumped. It was only years later that a visiting American doctor gave the parents the shocking diagnosis: The child had the rarest of genetic diseases. Progeria. The rapid aging disease, in which a child becomes an old man almost over night. Only 140 children in the world have this disease.

How terrible, I thought. To watch your beautiful little boy lose his teeth, his hair, his hearing, his sight...To watch him age and die with no way to help him.

But the story didn't end there. They asked the doctors if their other children would be all right. No problem, the doctors said. This is a hundred million to one chance....Their second son, Aaron, was born also born with progeria.

Two children out of 140 in the world. And in one Israeli family.

He lowered his voice. "We had a daughter after that. She was perfectly fine. When but when she was nine years old, she was killed in a car accident in front of the house."

I looked at this man. Job, he called himself. Yet, he wore a skullcap. He told me of his faith in God. He told me of his love for his wife. He told me how he was struggling to care for his sons. No one understood what he was going through. Children who at 14 are losing all their teeth, and need thousands of dollars in dental care. Children who need hearing aids and nurses and walkers and constant care. Do you need money? I asked him. For, that was the very least anyone could do to help.

He shook his head. " I don't want charity. They wanted me to go on television, but I don't want my children turned into a freak show. I don't want pity. This is what God has given me to deal with,and with His help, I will deal with it."

For years afterwards, I said a prayer for this man every time I lit Sabbath candles. I prayed that God would give him enough money to care for his family without outside help. About a year ago, I called him because I needed a ride to the airport, and he came to get me with his wife in the car. Meeting her was incredible. I asked him how he was doing. And he said thank God.

Two weeks ago, I got an unexpected fax from him inviting me to his son's bar Mitzvah. He had just lost his first son who had died at the age of 23. The family got up from shiva and went to celebrate their other son's coming of age. Would I come, please?

Of course, I did. And I will never forget it. I watched this mother, this lovely young woman who has been through more pain than most of us can even imagine, get up and tell the well-wishers, the families of other handicapped children, that every hour, every day, every minute with a beloved child is a gift, that should not be taken for granted. She hugged Aaron, who already half-blind and nearly deaf, joined the band by playing the drums with an enormous smile.

It was only after the party that I learned that this wonderful, incredible family is about to lose their home which is going to have to be sold to pay the accumulation of the enormous medical expenses that it took to care for these boys all these years. The government health fund and social service agencies absolutely failed them because there are just no rules for a family in which children need dental care that cost upwards of ten thousand dollars...Or hearing aids every few months. Or full time nannies.The banks have turned them down for an extension on their mortgage. They don't even have the money to pay all the funeral expenses...

All the years of going it alone has finally left this proud, wonderful, hardworking man at the end of his tether.

I really don't want these people to lose their home. I really want them to have the money they need to care for this child for the few years he has left on this earth. I really want to shake up the entire planet and say: Look at this!! Look how these people have been struggling all by themselves, this Israeli family, quietly, anonymously. There never was a more deserving case on the planet.

I've asked someone at Hadassah to see what can be done about forgiving these huge dental bills...(If you have influence at Hadassah, can you let people know about this family?) And I am working with the wonderful organization that has been caring for Aaron all these years, Shalva, to set up a special fund for Aaron and his family. I am asking, annoying, writing, calling, begging everyone I know to help them, please, just help them. While they still have their faith. They still have their hope. They still have their home. It's enough they've said kaddish for two children, and must watch a third turn into an old man over night... Why should they have to worry about money day and night as well?

If you can possibly help bring some light into their lives please go to Shalva's website using this link. It's a long page, with alot of information. In the list of donations, just check "other" and fill in Aaron's name with whatever amount you can. Please make sure you say the donation is for Aaron. Also, if you have any connections with Hadassah, please try to alert them to the needs of this very special family.

I love you all. And one day, I'm going to write a book about these people. They have so much to teach the rest of us about love, and faith, and patience and acceptance and wisdom.