ABU DHABI // The desperate parents of two young boys with a rare genetic disorder are appealing for donations to fund experimental treatment that could extend their sons’ lives.
Reslan Hawasli, 6, and his one-year-old brother, Ryan, both have Zellweger spectrum disorders; an inherited condition that affects the body’s organs and causes a loss of vision, hearing and mobility.
“It is a devastating disease,” said Khaled Hawasli, the boys’ father.
The disorder, associated with brain development, is so rare that when Reslan was born, doctors initially mistook his condition to be cerebral palsy. This led to Mr Hawasli increasing his son’s fatty food intake – the very thing that would make his son’s real medical condition worse.
In fact, fatty foods can accelerate the symptoms of Zellweger syndrome because the body struggles to process fat. Mr Hawasli found out his older son’s true medical condition only after the birth of his second son.
When Ryan began showing similar symptoms to his older brother, Mr Hawasli, a Syrian living in Sharjah, took his sons to the US for extensive tests.
Both were found to have the disorder, which occurs in less than one in 50,000 births, according to the National Institutes of Health. Those at the most severe end of the spectrum do not live for more than a year.
Imagine a normal family who discovers that a child cannot hear,” he said. “We have been hearing news like this every month for as long as we can remember.”
By the time Reslan had been given an accurate diagnosis, his condition had rapidly deteriorated.
“He lost most of his hearing and cannot swallow food any more, so we feed him through a tube,” said Mr Hawasli. “He has lost the ability to move and can make only simple movements with his arms.” Ryan is faring better, but every day brings the possibility of his condition worsening.
Mr Hawasli read about a little girl in Belgium with a similar peroxisome biogenesis disorder, whose condition improved with a living liver transplant.
“Getting a healthy liver will rid the blood of long-chain fatty acid and toxic material and stop deterioration,” he said.
“The girl is now 15 years old and goes to school. Her vision did not deteriorate. She can walk and talk.” Mr Hawasli believes a living liver transplant could be a similar success with his youngest son.
The treatment is not suitable for Reslan, who, instead, has been recommended a liver cell transplant to delay deterioration, Mr Hawasli said.
Although there is currently no cure for the spectrum disorder, Mr Hawasli said he wanted his sons to enjoy a longer and better quality life.
A hospital in Brussels will charge US$140,000 (Dh515,000) to cover the medical costs. The Hawasli family, however, say they have exhausted personal funds to pay for the medical bills to date. They have raised about $50,000, but are hoping residents will come forward and pledge money towards the remaining cost of the procedures.
To donate, visit their website.
jbell@thenational.ae
