Giving Lavi life,

Get involved NOW!

As a result of a failure in our genetic tests, Lavi, 10 weeks old, was born having a genetic disease named CANAVAN.

He was diagnosed as deaf, blind & restlessness.

As the disease will progress he was expected to develop mental retardation and loss of motor skills. His chances to survive after the age of 4 are slim.

We are not willing to surrender to that fate!!!!


We established an international project page. Either by making a donation or simply by telling others, you can make a huge difference in many children's life.

Since Canavan is a very rare disease all currently available treatments are experimental.

There is one academic medical center in the U.S. testing a treatment and reporting some progress dealing with the disease. Such treatments are not financed by our current health insurance.

We have managed to collect the money for ongoing treatment, but real change in Lavi's condition requires a continuation of research and ultimately a brain surgery no later than 2010.

The only way to save Lavi is to find finance the research that will help many children with neurological diseases.

Our Story

When we got the diagnosis on July 16th, 2008 we immediately started to look for treatment options. We located through the internet the only medical & research center in the States that knows how to deal with Canavan. We managed to arrange a small budget and flew with Lavi to the Center at New Jersey. After 5 weeks of medical treatments we returned to Israel with 4 month old baby - smiling, hearing & reacting. Now we are getting into a "routine" in which we will have to arrive to N.J. every 3 months for follow-ups and by 2010- to go for a brain surgery.

The cost of the treatments up to 4 y.o. is USD 475.000

The cost of the research is USD 1.500.000 for the current step.

Due to the economical crisis in the States 3 major grants have stopped funding the research.

Without completing some steps of the research, the NIH will not approve the surgery that Lavi needs to survive.

Therefore we kindly ask for your help in raising money to support the research as well.

Details on the research and the treatment
 
We are privileged to be the parents of a beautiful & charming baby. We want to make sure we are doing everything possible to save him and we need your support in fighting for his life.

This is one of those moments when big words fade out, making place for the unheard voice of one little baby grasping at life, appealing to the kindness and greatness of the human spirit.

Thank you for taking part in this effort, may you have an answer to your prayers.

Yulia & Gili Ben Moshe

Toll free no. (from U.S.A) 1-866-944-LAVI (5284)
Israeli mobile no. +972-54-2132136/7
email: yuliapld@zahav.net.il

News

10.20.09
On September 1st, Lavi joined the therapeutic kindergarten at Beit Issie Shapiro in Raanana. We had to struggle for Lavi's right to get there with no more than one hour spent on the way, a struggle that we won yesterday. No triumphant feelings for me, however, but instead a collapse for a 3 hour sleep at the middle of the day. Originally I planned to write more about this, but the letters we receive from Simi Malka, Lavi's caretaker at the kindergarten, have changed my mind. I decided to simply translate some of her message and focus on the bright side of life.
Here are some of the letters that give us stregth to continue on our journey
08.21.09
I began writing on Thursday, thinking that on Sunday we will travel back to Israel. But reality changed our plans. Good news make us stay two more weeks, and we will only go back on August 24th. If you want to know why, click for details.
First, the brain scans results. Paula wrote to us that some results are very good, but other results are excellent.
07.07.09
3 months of intensive work are behind us and we are preparing for another trip to the US.
Many things have happened, but as usual I'll focus on Lavi.
04.23.09
I'm writing this on Saturday, a few hours before our flight back to Israel and I can now safely say that we are doing fine. Our journey is far from over, but the direction is clear.
03.14.09
The last month was packed with developments and international activities, and so it took me until now, two weeks before our third trip, to write an update.