The Miracle of Hussein Balhas

While distributing hearing aids in Beirut, Wafa Kanan met Hussein Balhas, a bright, spirited six-year-old who dreamt of a better future despite suffering from Fraser Syndrome, a rare disease resulting in tumors and mutations.

Where others saw a helpless case—so many birth abnormalities that his family and community didn’t know where to start - The ALO Cultural Foundation stepped in and took the case that changed Hussein’s life forever.

After considerable planning, Kanan brought Hussein to Los Angeles to meet with specialists. After numerous surgeries at Cedars-Sinai Medical Center, made possible by the International Children's Surgery Fund managed by Mending Kids International, Hussein returned to Lebanon. Now he is restarting his educational career and reintegrating with his follow students, equipped with new knowledge learned in the United States. Hussein is under consideration to be enrolled in one of the country’s top elementary schools.

The Long Journey

Hussein was born in 2000 with overwhelming congenital defects, including a left eye completely covered with skin, his right eye incapable of fully closing. Doctors performed initial operations to correct critical malformations, but much more was needed. Hussein was left with little chance for survival.

But he did survive - seemingly waiting for the day and hour when he would meet ALO Cultural Foundation founder Wafa Kanan. "His one wish was to look normal and see the world the way everyone sees it," said Kanan. “How could I not help him?”

Two years of planning ensued, coordinated by Kanan and her staff. A team of specialists was organized, willing to examine Hussein at no cost. The young boy arrived at Los Angeles International Airport in September, 2008 to a Hollywood welcome with television cameras and a greeting from LA Lakers legend Kareem Abdul-Jabbar.

With assistance from Caroline Shrednick of Tranquility Respite Care, LLC, the cadre of doctors was in place upon Hussein’s arrival. They were given six months to find answers, the length of Hussein’s visa. Among them were leading reconstructive surgeons: Dr. Guy Massry, Dr. Babak Azzizadeh, Clinical Professor of Ophthalmology Dr. John Shammas, Dr. Lisa Cassileth, Dr. Joseph L. Demer of the Jules Stein Eye Institute, and Dr. Stephen E. Haddad of Ocular Prosthetics, Inc.

John M. Graham, Jr., M.D., Sc.D., made the official Fraser Syndrome diagnosis, commenting that the disease usually spells certain death before age five.

“He has survived the critical phase,” said Michael Lloyd, member of the ALO Foundation Board of Directors. “Now he is here to fix everything that went wrong, or at least everything possible. And we won’t rest until he has received all the medical treatment he deserves.”

The evaluating doctors have been unable to resuscitate Hussein’s left eye. Even the most ambitious operations will not restore vision, nor make this eye look normal. The best known hope lies in prosthetics, but even this will require unprecedented innovation. The ALO Foundation worked closed with the staff at Cedars-Sinai Medical Center and Greg Fontana MD to correct Hussein’s other medical problems: hearing difficulties, syndactyly (fused digits), hypospadias, agenesis of one kidney and incomplete closure of the skull.

Hussein received nine surgeries during his eventual nine month stay in the U.S.: four hand surgeries (David A. Kulber, MD, FACS in collaboration with Robert M. Cohen, MD, PhD) to open vascular blood flow in his fingers and separate his hands, finally giving him a total of ten fingers; two surgeries to correct the abnormalities of his genitalia (Andrew L. Freedman, MD, FAAP); two surgeries to widen his ear canal and one to separate his tongue from his palette (by Gene C. Liu, MD).

Hussein’s needs remain great. He requires ongoing livelihood care and support. Currently, the ALO Foundation provides his glasses and other essentials and has partnered with the Starkey Hearing Foundation and their Regional Director Dennis Van Vliet, AuD to provide a lifetime supply of hearing aids and batteries.

This miracle child also requires continual medical evaluation and other needs including:

1. Additional operations for his ear, hands, left eye and skull.

2. A replacement kidney, should his own fail.

3. Reconstruction of his teeth.

4. Ongoing research for eye solutions – medical and cosmetic.

5. A possible operation on his feet should he have trouble walking.

6. Constant medical evaluation, physical therapy for his hands and occupational therapy.

7. Special needs in sports and equipment to protect his skull.

8. Tutoring to catch up in school along with accelerated private schooling.

9. Trips to the U.S. to advance his knowledge, connections and other possibilities.

On the whole, Hussein is a brilliant boy saddled with electronic and electrical equipment which sustains him. The Foundation aims to focus on his gifts and build his spirit, enabling him to become a productive member of society.

With cases like Hussein, it is imperative that hope not be lost. He wants to be a policeman or a firefighter and desires to help the Foundation make another boy’s dreams come true.

Hussein asks: "Why did God make me this way?" His case is one-in-a-million, and he has beaten the odds in his valiant struggle for survival. Hussein desires nothing more than a normal life. But that requires that odds continue to stack in his favor. It demands assistance from all of us who have the choice and the power to make a difference in this young man's life.

Hussein is a recipient of the ALO Cultural Foundation’s Forever Wish program, which helps underserved youth and the physically challenged realize their dreams.

Forever Wish has three program goals:

Forever wish is not interested in temporary fixes or short term success. The dreams we deliver are designed to impact the livelihood of others forever.

Our gratitude for those who’ve helped Hussein is boundless.

Please view a complete gallery of photos _taken during Hussein's long journey.