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Azenje's plight touches community

The parents of a little boy struggling with a rare genetic disorder say an outpouring of public support has lifted their hearts and spirits.

Since the plight of Azenje Smith was revealed in yesterday's Royal Gazette, this newspaper has received many offers of financial assistance from the public towards his treatment costs.

Parents Jamal Smith and Laurie-ann Stovell say they now plan to set up a bank account in Azenje's name into which people can donate money.

"I would just like to thank everyone who has responded," said Ms Stovell yesterday. "We have had people calling us all day, and it is so nice. I am feeling stronger now and am more hopeful."

Azenje has Mitochondrial Disease, a rare genetic disorder which attacks the brain cells, nerves, muscles and organs in the body. Although there are different forms of the disease, it is characterised by cells being unable to burn off food and oxygen, and so generate energy.

Mr. Smith, 32, and Ms Stovell, 25, have already lost one child to Mitochondrial Disease. Na'zyje died on May 13, 2005, after losing control of his limbs and slipping into a coma. He was 21-months-old.

Then, on May 31 this year, Mr. Smith's cousin lost a two-year-old boy to the same disorder. Mr. Smith has contacted The Royal Gazette in a bid to raise public awareness of the disease.

Azenje first started showing symptoms four months ago. He began losing his balance and falling over, his head kept rolling onto one side and his hands began "locking up", according to Ms Stovell.

Doctors at Children's Hospital Boston have told Azenje's parents that they do not know which form of Mitochondrial Disease he has. The 17-month-old boy now faces a lingering painful death unless he can obtain specialist treatment, and even then he may only have a 50 percent chance of survival.

Mr. Smith says Azenje's last hope lies with the Mitochondrial and Metabolic Disease Center at the University of California San Diego's School of Medicine, which specialises in research and treatment of the disease.

Mr. Smith, a mason from Pembroke, told The Royal Gazette on Thursday: "His heart rate goes up to 180 on a regular basis. Right now we are just going to relive this all over again, and if we don't get the right help he is going to end up in the same box as his brother.

"The doctors have no answers, they just don't know what it is other than being a Mitochondrial disorder.

"We're just trying to get this kid to San Diego because he could have a 50 percent chance there, but financially, we are distraught. We are broke."

Mr. Smith and Ms Stovell are still recovering financially from Na'zyje's illness. Towards the end of his life they had to spend two months in the US, while doctors at Children's Hospital Boston tried to save him.

Although some of Azenje's medical expenses are covered by BF&M Insurance, his parents still have to spend up to $400 a week on medication. The youngster has to take hundreds of pills each day, mixed up with PediaSure.

Yesterday Ms Stovell said it is looking promising that the UCSD Mitochondrial and Metabolic Disease Center will admit Azenje, and that BF&M Insurance will cover much of his costs. His parents however, will still have to pay for his medication and their living expenses while they are in San Diego.

"It's just a matter now of the San Diego hospital letting us know when we can bring him out," said Ms Stovell.

"We've just got to send them more information, but it seems likely."

Mr. Smith said: "I have a much stronger feeling now that we will be able to get out there. We have been very touched by everyone's response and we appreciate all the offers of help."

If anyone is interested in assisting Azenje, either through a donation or by holding a fund-raising event, please contact: news@royalgazette.bm