Dubai: In March this year, Gulf News carried a report on Khalid Hawasli and his wife Ji Seng Li, who were looking to raise funds to afford treatment for their two sons, Reslan, 7, and Ryan, 2, both diagnosed with Zellweger syndrome.
Zellweger syndrome is a condition that affects one in 50,000 children worldwide and leads to progressive deterioration and death.
The Hawaslis only ray of hope was a liver transplant surgery for Ryan and transplantation of liver cells for Reslan, who had grown too weak and could not tolerate a full transplant surgery. The surgery, costing around Dh550,972 without other expenses, was beyond the means for the Hawaslis and the longer they waited, the worse their children’s situation became.
When their story was published in Gulf News on March, donations poured in. The Hawaslis managed to raise $89,000 (Dh326,910) which enabled them to take Reslan and Ryan to Belgium for surgery in September that helped halt the deterioration in their condition. Khalid donated 30 per cent of his liver to Ryan, who is now gaining his strength and recovering.
Looking back
“Ryan is the second child in the world to undergo this experimental transplant procedure and it turned out to be successful,” says Khalid. “The blood tests showed that all the toxic metabolites were gone from his system; the blood sample was normal. Ryan is improving, gaining his strength back and is now able to sit up, hold his chest up and is becoming more interactive.”
Khalid, an IT security specialist, has dedicated all his days and nights to finding treatment solutions for his sons’ condition and said that had Ryan not undergone the surgery, he would have lost his vision and hearing and been unable to swallow food. Reslan has similar problems and in addition, he is not able to move.”
The donations, said Khalid, have helped save Ryan’s life. “I thank everyone so much,” he said.
Challenges
Meanwhile, Reslan’s case remains of acute concern because the liver cell transplant could not be done on him as the doctors discovered that it could lead to bleeding in his lungs.
“Reslan can’t swallow anymore, he eats through the tube in his stomach and his condition is deteriorating,” says Khalid. “When he gets the flu, it’s life-threatening for him because he immediately gets a lung infection. His situation remains bad, but we will stay strong and find a solution.”
Khalid finds it hard to deal with the bittersweet play of conditions with Ryan improving and Reslan being a cause for concern. “Reslan was misdiagnosed with a non-deteriorating disease earlier and we never knew this could happen. The last six years have been a difficult time for us trying to understand our children’s condition. We ended up selling everything we owned and worked hard to fund a medical research, which turned out to be not related to their case.”
Looking forward
But there is hope yet for Reslan says Khalid as he has learnt that in Luxembourg they have found a way to revive dead cells in the brain. “We’ve had Reslan for seven years, and we will not give up on him now. We are hopeful about the new treatment as it has so far only been tested on animals. I want to be able to finance their research so they can start testing it on people, and hopefully end up saving a lot of lives.”
Khalid says he has also decided to start his own foundation in the US, for financing medical research and raising awareness about its importance.
“Ryan’s success story is for parents all over the world who have children suffering from this deadly disease. In the future, I hope someone will come forward to fund medical research for Reslan’s case,” he said.
