Sunshine awaits boy

TEENAGER Mohammed Abdul Ali has been offered the chance to look into the sky and move outside a small room in a Bahrain hospital for the first time in almost 10 years.

The youngster, however, will first have to summon up all his courage to make the enormous step from the security of the Salmaniya Medical Complex sanctuary that has been his home for so long and the life-saving equipment he is attached to.

Mohammed, 13, can hardly remember what the warmth of the sun or a soft breeze on his face feels like.

"All he wants to do is to see the sun. For years he has kept a pair of sunglasses under his pillow, waiting for the day when he can go outside. He always says 'shams' the Arabic for sun," explained Dreena Rogers, a hospital volunteer who has visited Mohammed since he arrived.

In1998, at the age of four, Mohammed was admitted to the hospital's paediatric unit with a rare and severe form of muscular atrophy - a genetic, degenerative muscle disease that causes progressive muscle weakness and the eventual wasting away of the body.

His lung muscles are too weak to function on their own and a ventilator which acts as an artificial lung keeps him alive.

The room, with tiny high-up windows, is all that Mohammed knows. As well as the pair of child-sized sunglasses under his pillow a red baseball hat is also safely stashed under his blanket.

Until last week there was virtually no possibility of Mohammed leaving the hospital - without his ventilator he would not survive for more than five minutes.

But last week a portable ventilator and specialised wheelchair that will allow him to go outside were donated by brokerage firm ICAP in conjunction with The Palm Association charity.

"The new chair and portable ventilator will change his life," said Mrs Rogers. "We would love to take him out to a restaurant or to the Formula 1 because he adores cars. And he would love to go back to his village and see his home and his family."

The BD6,000 state-of-the-art LTV 1000 portable ventilator and new wheelchair was paid for by ICAP, after managing director Kevan Riley met Mohammed during a visit to the hospital.

"Kevan was leaving the hospital and he said he didn't care how much it would cost - if Mohammed wanted to see the sun, he would," explained Palm Association member, Eibhlen Crosse.

The specially-constructed wheelchair will support Mohammed's tiny, weak body and now the teenager is plucking up courage to leave the room.

"He has been in the same room for so long that the prospect of going outside is very scary to him and he is so nervous," explained Mrs Rogers. "He is very excited but it will take time until he is ready. We hope to take him out for short periods at first, build up to half an hour and then a whole afternoon."

Nursing supervisor Lamya Al Jowder added that it would take the support of people like Mrs Rogers, who Mohammed has known most of his life, to encourage him to take the brave step of going outside.

"The last time he was outside was when he came to the hospital. You have a kid who never had the ability to make a choice. Now he does, and it's a frightening thing to do," said Mrs Crosse.

Until now, Mohammed's life experience has been completely dependent on the people who come to visit him.

His only link with the outside world is a cherished mobile phone which he uses to call Mrs Rogers every morning.

"It is people like Dreena and his teacher Khalil Ebrahim Jowayed who keep Mohammed going," explained Palm Association member Nadia Shaheen.

Three years ago, Mohammed's older brother Hussain died from the same condition. The boys shared the same room until 2001 when Hussain developed an infection that forced him into isolation.

Mrs Rogers brought the boys' plight to the attention of Batelco, who donated personal computers, equipped with webcams and microphones which allowed the boys to see and speak to one another.

"They were incredibly close and when Hussain died Mohammed was miserable. It's so sad because Hussain would have been 16 now. Mohammed was in denial for months and he misses him terribly," said Mrs Rogers.

After the loss of his brother, Mohammed's dedicated teacher, Mr Jowayed, helped him through his grief. Everyday he holds bedside lessons, and today Mohammed can read, write and use a computer. He often writes his brother's name in Arabic and the word Batelco in English.

Above his bed are two school certificates.

"These are great milestones in his life and he is so proud of them," explained Ms Shaheen.

But last summer, due to an administrative glitch, Mohammed's teacher was forced to leave his position at the hospital.

"For years there were no teachers for the children and many spent a lot of time without education," explained Mrs Rogers. "But five years ago Khalil (Jowayed) came and worked wonders with Mohammed and the other children. Then last summer, because of an administrative problem, Khalil had to leave.

"Mohammed was miserable. He wouldn't eat, drink or talk. That's when I approached the Palm Association to see if they could help and they found someone on the hospital committee who got him reinstated. Now that he is back, Mohammed is very happy."

Despite the love and care of dedicated hospital staff, Mohammed faces daily challenges and frustrations. He is too weak to sit up or turn his head and relies on staff for all his needs.

"He loves to be around other children, but many of the youngsters he shares the ward with are either very young, or have cognitive difficulties, so it's not very stimulating," said Mrs Rogers.

He sometimes spirals into depression as a result of seeing young children on the ward pass away.

"There are so many small children who die. Mohammed always knows when something is wrong and will get depressed," explained Mr Jowayed. "But everyone in the hospital knows him and loves him and lots of people come to visit him."

Although Mohammed will never be able to leave the hospital permanently the portable ventilator and specialised wheelchair will open up the world for him.

"It will be so lovely," said Mrs Rogers. "For so long he asked me to take him outside, to see the sun and feel the breeze on his face. Now we can do it."