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Wednesday, December 2, 2009

Please Help With This Fundraising To Save Lavi's Life.... - My Special Inner Child

Dear Friends, Please Help Fundraising To Save Lavi's Life....

Dec. 1st, 2009 – Yulia and Gili Ben-Moshe, who live in a small town in Israel, were confronted with every parent’s nightmare: their third child, Lavi then three months old, was diagnosed with Canavan Disease.

At the first moment they didn't understand what it means, but after a short while they learned that children with Canavan disease first lose their sense of sight, then their hearing and their motor function. Usually, before age 4, the disease kills off their brain cells and the children die.

It took them 24 hours to start the war to save Lavi. They went online and found Dr. Paola Leone, the leading American expert on Canavan disease. They realized that Dr. Leone, works out of the UMDNJ-Robert Wood Johnson Medical School, is developing innovative treatments for Canavan patients.

Ten days later the couple was on a plane on its way to the US. They met with Dr. Leone who put Lavi on her pharmacologic therapies, which resulted in delaying his brain deterioration. This was the first hopeful sign.

Today, at 18 months, Lavi is considered a medical miracle. He is progressing neurologically – he can see and hear -- defying the dire diagnosis.But unfortunately the existing Drugs alone will not retard the progression of the disease. The question for the parents was one: What else can we do to save Lavi?

While staying in New Jersey, they learned that Dr. Leone is conducting basic scientific stem cell research that holds hope for Canavan patients. Since the disease kills off brain cells, Dr. Leone believes that implanting stem cells into the brains of children with Canavan would result in the proliferation of functional brain cells. She is now testing her theory in the laboratory, and intends clinic testing as soon as she scientifically proves the efficacy and the safely of the stem cell treatment. The clinical protocol to use stems cells to treat Canavan patients should be approved within 24 months by the Food and Drug Administration. The subsequent clinical trial would include 15 children with Canavan Disease.

Yulia and Gili Ben Moshe decided to approach Dr. Leone and asked her to put Lavi on the testing group of the new process.
"Lavi's psycho-motor development has been improving greatly since the pharmacological therapy began,” says Leone. “The therapy is preserving his brain but is not curing the disease. While Lavi and many other children are struggling to change their prognosis, scientists are working incessantly in my laboratory to bring a cure to fruition. The timing and success of a cure for Canavan Disease fully depends upon the availability of appropriate research funds that would also model the cure for other neurodegenerative diseases.”
Dr. Leone’s research is funded only partially by the government. For her research to be completed and approved, she needs an estimated $ 1.5 million.

This couldn't deter the courageous parents. They decided to go fund raising for the complementary funds.
They first started in Israel, where they raised the money for Lavi's medical treatments, and then they decided to start an international appeal. They partnered with an Israeli start-up, called give2gether, which developed an innovative platform for micro-philanthropy. They built a website which chronicles Lavi’s life Journey, and enables grass roots fundraising.

Yulia and Gili assure that all the money raised will to fund the research. They hope that each donor will tell Lavi's story to at least 10 friends, and this way, even with small donations they will be able to raise the necessary funds to save their child.
“It’s a very hard for my wife and me to face this ordeal,” says Gili Ben Moshe, “but Lavi came into this world with a purpose. We believe it’s our privilege to fight for Lavi’s life and for the lives of other children who have this lethal disease.”

Blessings Doreen Cohanim C.Ht

Save Lavi's Life
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Please Help With This Fundraising To Save Lavi's Life.... - My Special Inner Child

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