Mourning Dr Jamil Zogheib: Lebanon’s Stephen Hawking

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TV host Karen Boustany’s interview with Dr. Jamil Zogheib went viral as thousands were touched by his life story. Friend and colleague Dr. Kamal Kallab, left. (Supplied photo)
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Karen Boustany worked with ‘Dr. Jamil’ on projects including a documentary. (Supplied photo)
Updated 14 May 2019
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Mourning Dr Jamil Zogheib: Lebanon’s Stephen Hawking

  • Left paralyzed by a neurological illness, Dr. Jamil Zogheib worked tirelessly to raise awareness of the disease before his death this week
  • While the average survival period for ALS is five to seven years, Zogheib’s resilient faith and hopeful view on life allowed him to live for 10 years

DUBAI: Dr. Jamil Zogheib was not just a regular Lebanese pediatrician. He was also a fighter, who despite being hit by amyotrophic lateral sclerosis (ALS) in 2008, wrote books using a special device that allowed him to communicate with his eyes, much like the theoretical physicist Stephen Hawking.

Hawking also had ALS, also known as Lou Gehrig’s disease, the neuromuscular disorder affects the nerve cells and spinal cord progressively, leading to the paralysis of the muscles.

Zogheib, who became permanently paralyzed after contracting the disease, died on Monday from complications resulting from the illness.

“From the first time I met him and he looked at me with his eyes, I felt that we had a bond that would last forever,” said Karen Boustany, a friend and TV host who worked with Zogheib. “It was a mutual, positive energy.”

When she first interviewed him for her show in Lebanon, the clip went viral as thousands across Lebanon were touched by his story. Instead of allowing himself to surrender to paralysis, Zogheib, who has three children, used a special device to communicate with his eyes, enabling him to write a total of 10 books.

Zogheib with his daughter. (Supplied photo)

His first book, “Ma Vie, Mon Histoire” (“My Life, My Story”), tells the tale of his disease. His second was named “Le Medecin des Ames Perdues” (“The Doctor of Lost Souls”). In his books, he offers a message of hope, while struggling against the illness. 

Boustany was so moved that she made a documentary about him, entitled “Jamil, A Flying Soul.”

“I used to go to visit him all the time,” she recalled. “I took my family, and we became friends, but every time I would come, we would plan projects. We were both the brain, but I was the physical energy, because he couldn’t do it. He was truly the wind beneath my wings.”

She felt she had become his messenger in spreading awareness about the disease and its treatment. “He changed my life,” she said. “He even knew his 10th book would be his last, as he named it ‘La Derniere Page’ (‘The Final Page’). He was in love with life, and he didn’t want to die, always hoping to find a cure.”

Their partnership generated a number of projects, pushing Zogheib to fight for his life even further. In 2015, they established the Lebanese ALS Association, of which Boustany became president.

“He wanted to spread awareness about the disease, because it’s not well known, as it’s not widespread,” she explained. “It was like cancer was 50 years ago — now it’s becoming more common and you can find more cases, but 10 to 15 years ago, it was still an ‘orphan disease.’ Not many people had it, and you don’t have people investing to find a cure.”

The association worked wonders, supporting 100 ALS patients across Lebanon in every possible way — psychologically, medically, socially and financially. Together, they created the ALS Day, a family day on the first Sunday of every September when people from all around the country spend time together while playing games over lunch.

As a public figure, Boustany was also able to invite a number of celebrities to share the special day, now in its fourth year, with patients and their families. “It was so beautiful,” she said. “It was like a festival, and it made them all truly feel like a part of society.”

A gala dinner in Dubai, with Zogheib’s presence, helped to raise funds in 2105, followed by the first ALS medical conference in Lebanon in 2016. Zogheib received standing ovations as one of the most celebrated men in both countries.

In January 2018, Lebanese President Michel Aoun visited Zogheib at home after hearing about his story.

“It is the death of a king,” Boustany said fighting back tears. “He was always ready, always dreaming and ready to fulfil his dream. His body or disease never held him back. He had such an energy, such a strong brain, he was a genius and you could feel his soul through his eyes — he had amazing eyes. He used to look at me, and
I could understand everything he wanted without even telling me.” 

Boustany wished to pay tribute to him and his incredible story. “I took Dr. Jamil like my soulmate, and everything I wanted to do for myself, I would do for him,” she said. “Today, I am happy that I did all this when he was alive, because you usually honor a person after his death, which isn’t OK. He is a lesson of life, he was my mentor, and he changed my life.”

Zogheib touched the lives of many. Dr. Kamal Kallab was one of them. A neurologist and president of the scientific committee of the ALS Association, Kallab was Zogheib’s senior when he was still a medical student.

“Later on, we worked together — we had to see patients together and manage them together,” Kallab said. “When he was diagnosed with ALS, I wasn’t surprised by his capacity to go beyond any obstacle. I always knew him as the most enthusiastic person, and the word impossible didn’t exist for him. He was always this way.”

When the disease struck Zogheib, he turned to Kallab for advice. “He knew what it was and what his future held,” he explained. “I remember he told me, ‘I am not afraid, I can cope with it, just be frank with me.’ Patients like these in our professional life are a hallmark — we always remember these outstanding personalities.”

Dr. Kamal Kallab, Dr. Jamil Zogheib's friend and colleague. (Supplied photo)

Kallab followed him regularly as he started to fight against the inevitable handicap. “In this disease, the handicap is progressive,” he said. “It’s the kind of disease where we are never better than before. It worsens over time, slowly, and without any improvement. Just imagine a person who has this disease, who is a clever doctor and knows what he will be facing in a few years.”

While the average survival period for ALS is five to seven years, Zogheib’s resilient faith and hopeful view on life allowed him to live for 10 years.

“It was more than expected because of his will,” Kallab said. “Knowing what he will face, he was preparing himself in advance to manage the difficulties of becoming handicapped. He developed all possible ways of constantly being productive.”

The disease has a host of detrimental effects, including loss of power in the limbs and in the tongue, removing the ability to speak and, potentially, to breathe.

In the final stages of Zogheib’s life, he could only move his eyes. “He knew that, and he prepared himself with a special electronic device, where a beam would go to his eyes, and he would move his eyes, reflecting the beam to any letter on a keyboard. That’s how he wrote 10 books.”

Kallab said the books truly reflect Zogheib’s personality. Some raised awareness for parents of children affected by the disease, while others related to his own experience fighting the illness.

“Even when he was very sick, he was thinking about and caring for others,” Kallab said.

“He was amazing and so commendable. In a lifespan, it is usually very rare to come across such people — the association was about caring for others and letting people know how they can help themselves. 

“Caring for others, even in his weakest moments, was his signature, and he never forgot that.”

Decoder

Amyotrophic lateral sclerosis

Also known as Lou Gehrig’s disease, ALS is a neuromuscular disorder that affects the nerve cells and spinal cord, progressively leading to paralysis of the muscles. ALS rapidly affects the body and is usually fatal within five years. Jean-Marie Charcot (1825–93), a French neurologist, pathologist and founder of modern neurology, was the first to describe the symptoms that define ALS. Known in France as maladie de charcot, the disease is more commonly known in the US as Lou Gehrig’s disease, after the famous baseball player who died from the illness. ALS is not contagious and most of the reported cases are sporadic. The disease is hereditary in only 5 to 10 percent of cases, and mostly affects people between the ages of 40 and 75.


Brother of 2017 Ariana Grande concert bomber extradited from Libya to Britain

Updated 17 July 2019
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Brother of 2017 Ariana Grande concert bomber extradited from Libya to Britain

  • Salman Abedi blew himself up at the end of a show by US singer Ariana Grande in 2017, killing 22 people
  • Hashem Abedi was handed over to British officials and then flown to Britain where he was arrested for murder

LONDON: Libya on Wednesday extradited to Britain the brother of a suicide bomber who attacked an Ariana Grande concert in Manchester in May 2017 and killed 22 people, officials said.
Salman Abedi's brother Hashem, who was arrested in Libya days after the bombing, was handed over to British officials and then flown to Britain where he was arrested for murder, Greater Manchester Police said in a statement.
"He has today been successfully extradited for offences relating to the Manchester Arena attack," it said.

 


Asked about the arrest, British Prime Minister Theresa May said it was "an important moment in the investigation.
"I hope it is a welcome step for the loved ones of all the victims," she said, condemning the "appalling" and "senseless" attack.
Manchester police said Abedi was also being arrested for attempted murder and "conspiracy to cause an explosion likely to endanger life".
He is expected to appear in a London court on Thursday.
A spokesman for the Libyan force which had held him earlier told AFP that Abedi was "in the plane headed for Britain".
Ahmed Ben Salem of the Special Deterrence Force (Radaa), an armed group which serves as the capital's police, said he was being extradited in line with a decision of the Libyan judiciary following a request from Britain.
According to Radaa, the brother has allegedly acknowledged that he was in Britain as the attack was being prepared and was "fully aware of the details".

 

 


His father was also detained in Libya but released a few weeks later.
Salman Abedi carried out the bloodiest terror attack in Britain in more than a decade when he detonated a suicide bomb after a concert by Grande, leaving many children among the dead.
Libya's internationally recognised Government of National Accord (GNA), which is based in Tripoli, said in April that Hashem Abedi's case was being determined by the North African country's courts.
Libya has been mired in chaos since the ouster and killing of dictator Moamer Kadhafi in a NATO-backed uprising 2011.


The Abedi family, originally from Libya, had fled to Britain during the dictatorship, but the brothers returned to the country along with their father when the uprising began in 2011.
There has been a surge in fighting since military strongman General Khalifa Haftar launched an offensive on Tripoli, seat of the GNA, on April 4.