Live liver transplant is only hope for brothers with Zellweger’s disease

Dubai, UAE: When twin tragedies struck Dubai residents Khalid Hawasli and his wife Ji Seng Li in the form of a rare disease afflicting both their children, Reslan and Ryan, the only way they decided to deal with the devastating news was to wipe away their tears and fight for the lives of their two children by raising funds for a very expensive surgery that can hope to give them a better quality of life.

Reslan is six-and-a-half years old and Ryan is one-and-a-half years and both have been diagnosed with Zellweger’s disease, a rare genetic condition that affects one in 50,000 children and leads to progressive deterioration and death.

The elder child, Reslan, has lost his vision completely and most of his hearing, he cannot swallow food anymore and has to be fed through a tube connected to his stomach. He has also lost his ability to move and do simple things such as hug his parents who can only do one thing to make him feel good — make him smile as much as they can. Ryan, the younger son, is a happy child who has begun to lose his vision — a natural consequence of Zellweger’s disease.

“The only way to deal with this is to be strong and stand up and fight back. There must be something I can do and I am going to try my best,” says Hawasli, an IT security specialist in a local firm who has dedicated all his free time to finding solutions for his children.

Fortunately, he was able to locate a Belgian surgeon, Dr Sokel Etienne, from Cliniques Univeristaires St Luc in Brussels, who conducted a rare liver transplant on a girl with the same condition. “This girl had a successful liver transplant from a live donor and she is now 15 years old and has lost neither her vision nor hearing and can walk to school,” he says.

For the Hawaslis, this is the only ray of hope for their children and they have established contact with Dr Etienne and learnt that the father can transplant a part of his liver for Ryan. As for Reslan, he has grown too weak and cannot tolerate such a procedure so the surgeon has suggested transplantation of liver cells from a healthy donor instead as those liver cells should be sufficient enough to remove the toxic very long chain fatty acids (VLCFA) from the blood and make him healthier and perhaps even stop the deterioration.

The surgery for both will cost $140,000 (Dh513,800) and the Hawaslis are dedicated to raising this amount for their children. They have started a fund-raising initiative on February 20 at the crowdfunding site goindiegogo.com. Their imitative, valid until June 20, has so far helped raise $43,277 (Dh158,826).

“It took us six years to be able to understand our children’s condition and make this decision. We are going to sell everything we have and raise money from all that we have. It is a long journey for us but we are hopeful that with the help of people, we will be able to raise these funds that will help us arrest the deterioration in Ryan and Reslan and we will be able to improve their quality of life,” says Khalid, who is appealing to the people to help him raise this amount.

© Gulf News