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Toddler dies of rare disorder

Missed: Znari Smith and Jamal Smith, the brother and father of Azenje Smith.
Azenje Smith lost his battle against a rare genetic disorder at the weekend.The two-year-old passed away at King Edward VII Memorial Hospital on Friday evening as his mother and a nurse were changing his diaper.Stricken with Mitochondrial Disease, the toddler only ever had a 50 percent chance of survival, but parents Jamal Smith and Laurie-ann Stovell tried to make sure he had as happy a life as possible in his short time.

Azenje Smith lost his battle against a rare genetic disorder at the weekend.

The two-year-old passed away at King Edward VII Memorial Hospital on Friday evening as his mother and a nurse were changing his diaper.

Stricken with Mitochondrial Disease, the toddler only ever had a 50 percent chance of survival, but parents Jamal Smith and Laurie-ann Stovell tried to make sure he had as happy a life as possible in his short time.

"He was always smiling. That's one thing you can never take away from this child, his smile," said Mr. Smith.

The grieving father paid tribute to his "brave" son yesterday and expressed thanks to the community for all their support.

Since an appeal in The Royal Gazette a year ago, the people of Bermuda raised more than $9,000 to assist Azenje's medical costs and his parents' travel expenses to US hospitals.

The youngster was receiving treatment at the Mitochondrial centre at the Cleveland Clinic, Ohio, but started to deteriorate on his return to Bermuda three weeks ago.

"He deteriorated so quickly, we weren't expecting it to be so fast. Then on Friday I just had a gut feeling he wasn't going to make it through the weekend," said Mr. Smith.

"When he left Bermuda for Ohio he was still able to say a few words and lift his arms, but when we brought him back he was limp, he couldn't even hold up his head."

For Azenje's parents it is the second time they must go through the pain of losing a son to Mitochondrial Disease.

Azenje's older brother Na'zyje died of the disease in May 2005, at the age of 21 months.

Mitochondrial Disease attacks the brain cells, nerves, muscles and organs. Cells are unable to burn off food and oxygen, and so generate energy and function.

When The Royal Gazette spoke to Mr. Smith in June of last year, shortly after Azenje was diagnosed with the same illness, he told us he had a recurring nightmare of him standing over his son's graveside.

"I'm always waking up at four in the morning, and it's always the same dream where I'm at the grave looking at the coffin," he said.

Tragically on Saturday he and Miss Stovell will have endure this when they bury Azenje at St. John the Evangelist Church, Pembroke.

Last night, reflecting on the muscle and joint pain his son would have suffered in his final months, Mr. Smith said: "I know now that he is in a better place because he will no longer be in pain, but I am sure he would much rather be here with us all.

"He put up a brave fight, for a child of that age to go through all this pain.

"When he could no longer play with the other children he used to scoot around instead, sitting on his butt and pulling himself around with his arms, just to try to keep up with them."

Mr. Smith and Miss Stovell's eldest son, six-year-old Znari, is already missing his younger brother.

"It's been hard on him and he's been crying at school," said Mr. Smith.

Miss Stovell, 27, is "in a lot of hurt" but is currently trying to keep busy with the funeral arrangements.

Azenje's father said: "At the moment this is just devastating. We thought we were going to win this battle and tried so hard, we tried to do everything for this child, but we lost him.

"Now we will have to open up that grave with our other son (Na'zyje) in there and I don't know what effect it will have on us all.

"But I am not going to question the Lord's plan for this child. We just have to hold our memories inside our hearts."

Paying tribute to his son, Mr. Smith, 33, said: "Azenje was an extremely happy child, he had such a good spirit.

"Even having to take all his medication and the pain he was in, he was never hard on anybody. He was just quiet, easy-going and relaxed. And he was such a friendly child, he would always greet people by sticking out his hand and giving them a 'pound'."

Mr. Smith, a mason, said he and Miss Stovell, a cash security escort, want to thank everyone who donated to Azenje's medical fund.

Contributors included the Committee of 25, Clive Wilson and Lanea Tanner of Financial Assistance, LCCA, the Bermuda High School for Girls, Berkeley Institute Key Club and the Open Door Christian Assembly.

"We also want to thank family and numerous friends, and members of the public," said Mr. Smith.

"Thank you all so much. Words cannot even explain what this help has done for this child. It meant he was able to get to all of his appointments and on time."

Azenje's funeral service takes place this Saturday at the Salvation Army Citadel church in the City of Hamilton. His internment will follow at St. John the Evangelist Church.

The people of Bermuda are invited to attend the 3 p.m. service at the Citadel.

Mr. Smith said: "It is going to be a full open service for everyone, because this child received such an open, warm response from the community."

Flowers are welcome.

Azenje Smith with his father Jamal