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Monday, February 9, 2009

From CBS NEWS: Hussein, 8, Fights Rare Disease Against All Odds

Watch the Emmy-nominated CBS News special report on The here.

LOS ANGELES - Hussein Balhas is like any other 8 year old; eager to learn, so curious about everything, and loves to eat. His mom says it has not been easy for him. He has had 13 surgeries at such a young age, more than any kid should have to endure.

Born with a condition doctors now believe to be Frasier’s Syndrome, he has been forced to learn how to deal with having webbed feet and hands, one eye completely covered by skin, and the other eye incapable of closing. He also has severe birth defects; including one on his skull that his mother has always covered by the way his hair was cut.

Kids with Frasier’s Syndrome usually don’t survive past 5 years old, but Hussein has, and he is everything to his family.

And now he is everything to Wafa Kanan, founder and president of the Alo Cultural Foundation. Two years ago her organization funded hearing aids being given out in Beirut. Hussein received a pair, but had no idea from that moment on his life would change forever.

Video from the relief group of Hussein and his mother pleading for help made its way back to Kanan. “I couldn’t see a mother wanting something for her kid, and not being able to do something about it,” says Kanan after reviewing the footage.

It was a call Wafa could not ignore, and with the help from ALO magazine editor-in-chief Michael Lloyd, who also doubles as Hussein’s tutor, a trip for him and his mother was organized. Everything was taken care of from host families to stay with as well as a team of doctors.

Kanan remembers the day Hussein was told the good news, “It was like the American dream…his mom told me he would run into the streets and tell people he was going to America to get his operation.”

His eyes, ears, and much more will be worked on by specialists at Cedar Sinai Medical Center. Doctors feel most challenged with his left eye because the reason for is defect is still quite puzzling to them.

Hussein knows he is different than most kids, but he is starting to feel accepted, something he has never felt before. He dreams of running on a track when his feet are fixed, and now even dreams of what he wants to be when he grows up.

People who meet him often say his spirit is contagious.

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