‘Thank you all for saving Ryan’s life’

Almost a year ago, Mr Khalid Hawasli issued an appeal to readers for donations to fund experimental treatment that could extend the life of his two sons, Ryan and Reslan, who suffer from Zellweger spectrum disorders, an inherited condition that affects the organs and impairs vision, hearing and mobility.

Khalid Hawasli and Ryan as they prepared for an operation that would change the boy’s life. Courtesy Khalid Hawasli

ABU DHABI // Khalid Hawasli has a message for readers of The National: "Thank you for helping to save my son's life".

Almost a year ago, Mr Hawasli issued an appeal to readers for donations to fund experimental treatment that could extend the life of his two sons, Ryan and Reslan, who suffer from Zellweger spectrum disorders, an inherited condition that affects the organs and impairs vision, hearing and mobility.

After his appeal, donations flooded in. Ryan, the younger of the two siblings, has since had a successful living liver transplant that prevented escalation of the disease and helped him regain strength and begin to play like a normal, healthy two-year old.

“It worked like magic,” said Mr Hawasli – who gave part of his liver to save Ryan’s life.

To see his youngest child act like any two-year-old was “just incredible”, he said.

“He can stand now,” said the IT worker, of Sharjah. “He couldn’t stand before. It is just amazing.”

Zellweger disorders occur in fewer than one in 50,000 births, according to the National Institutes of Health.

Mr Hawasli had read about a little girl in Belgium with a similar disorder, and whose condition improved with a living liver transplant.

The treatment was not suitable for Reslan, who could not tolerate a full transplant surgery. Mr Hawasli had appealed for help in raising the US$140,000 (Dh515,000) costs.

He received more than Dh700,000 in donations.

In October, Ryan was prepared for surgery at Cliniques Universitaires Saint-Luc, Brussels, Belgium, becoming only the second child to undergo this experimental procedure, said Mr Hawasli.

“We can not say he is cured because he is still going to be a special needs child. However, there are no more toxic chemicals in his blood.”

Had Ryan not undergone the surgery, he said, the toddler would have lost his vision and hearing and been unable to swallow food. Mr Hawasli still needs to find treatment for Reslan and is looking into experimental research.

The seven-year-old was recommended a liver cell transplant to delay deterioration. However, doctors have advised against the procedure, as he has grown too weak.

“We will keep trying, said Mr Hawasli.”