Logo of Phnom Penh Post newspaper Phnom Penh Post - Kind hearts alleviate little Sok Mao's hemophilia

Kind hearts alleviate little Sok Mao's hemophilia

Kind hearts alleviate little Sok Mao's hemophilia

Sok Mao, holds a drawing he made of him and his mother meeting Alfred Steinburger, who arranged a $30,000 donation of life-changing medication. The drawing reads "I want to thank you all my life."

L ike many 10-year-old boys, Din Sok Mao is endearing, shy and often found drawing colorful crayon pictures. He lives with his parents in the small farming village of O Thkov, 8 km from Pursat, where his father works as a prison guard.

He hates missing class at his tiny village school, and has a mind towards his future.

"I don't want to be a farmer," said Sok Mao. " I like airplanes."

But Sok Mao's future is in peril. He suffers from a severe case of Type A hemophilia. His blood lacks the natural clotting agent known as Factor 8, without which even a minor cut can lead to prolonged bleeding.

A slight knock, unnoticeable by most, can leave Sok Mao with massive bruises. Internal bleeding causes painful swelling in his arms and legs that often cripples him for weeks at a time and prevents him from leaving his home. Frequent bleeding from his nose, ears and teeth is common for Sok Mao. Those close to him say he never complains.

Seng Malai, Sok Mao's mother, has been searching for an explanation to her child's suffering since the first signs of his disease became apparent. She said she embarked on a relentless search to find help, but no one could explain what was happening to her son.

"I was so scared for my son but we had so little money, and every doctor we visited sent us away with nothing. I didn't know what to do," Malai told the Post. "One time Sok Mao cut his mouth and the bleeding did not stop for 10 days. I took him to a doctor who tried to stitch it closed but this just made it worse. I was so scared."

This was not the first time Malai had seen the symptoms of hemophilia. She had already lost her first son when he was three months old with no medical explanation.

And as a teenager she had cared for her younger brother, who was constantly bedridden and in pain from the effects of what is now assumed to be hemophilia. Amid tears she explained the fear she felt when the relentless swelling in her young brother's knee finally broke open creating a fatal blood flow that could not be stopped. He was 12.

Today, Malai is all too aware of the fate that awaits her son if she fails to find adequate medical assistance.

Malai's story is not unique. Hemophilia typically affects one in 10,000 people, so there are likely to be around 1,000 more families in Cambodia living through similar nightmares, according to Dr Robin Devenish, a consultant in diagnostic laboratory medicine and a hemophilia specialist.

But Devenish said it's impossible to know precisely how many people have been affected by hemophilia because cases were either misdiagnosed or patients were sent away without treatment or explanation.

If untreated, the chances of surviving long term are slim, particularly when the problems are misunderstood. If the symptoms are misdiagnosed, local doctors are likely to try to operate on swollen joints in an attempt to relieve the pressure. Without the clotting agent Factor 8 in the blood stream, operating on a hemophiliac inevitably leads to death through blood loss.

Hemophilia is a hereditary disease passed down through the mother. The disease affects only males, but they cannot be carriers. Devenish explained that as Cambodians generally have big families, there are likely to be some families with two or three hemophilic children. She is working with another eight-year-old boy in Kep who so far has received only minimal treatment that Devenish paid for herself.

Earlier this year, Devenish was awarded a Bayer Biological Grant that enabled her to set up a hemophilia testing system in Phnom Penh. The grant enabled her to run a workshop to train local technicians to recognize, test and treat hemophilic patients. For the first time, those suffering from hemophilia and their families have the chance to gain knowledge about their condition.

Steven Harknett, adviser for Disability Development Services Pursat (DDSP), discovered Sok Mao during a visit to O Thkov village to treat locals suffering from disabilities. He was told about a little boy who was crippled and unable to walk, but on meeting Sok Mao he suspected the boy might be suffering from hemophilia. After years of frustration, Sok Mao was finally tested and diagnosed. He and his family finally had answers, but the problem of treating the ailment was still in question.

Sok Mao shows his swollen knee. Days after his first treatment with Factor 8 the swelling reduced and he was able to go to school.

In developed countries, a child with hemophilia typically receives regular injections of Helixate NexGem, or Factor 8 as it is commonly known. These injections replace the missing clotting agent in the bloodstream and reduce the effects of the disease to the point where patients are able to enjoy a normal life with few restrictions. In Cambodia, this medication is not available and imports from China cost around $180 per bottle. If Sok Mao were to survive, he needed a sponsor.

Steve Harknett wrote a letter in the Phnom Penh Post of May 5 appealing to anyone who could help Sok Mao. Due to the public plea, Alfred Steingruber, who runs a school project in Sihanoukville, managed to secure a donation of $30,000 of Factor 8 medication through the University Clinic of Graz, Austria. On Thursday, July 6, Steingruber arrived at Phnom Penh airport with 60 bottles of this life saving treatment.

"As a Christian I've always believed in miracles, but I still can't believe the way everything and everyone has come together and played their part in saving this little boy," Devenish said. "From Steven's first meeting with Sok Mao, the diagnosis made possible by the support I've received from NIPH and Bayer, the plea for help that was printed by the Post, and the efforts of Mr Steingruber, I'm so happy that we can all now meet together and celebrate this amazing achievement with Sok Mao and his family."

To prolong the benefits of the donation, the Factor 8 will be used as a treatment for his symptoms rather than prevention, but it still means that for the first time he has a chance to live a normal life. More than anything he is looking forward to going back to school.

"When my legs hurt I have to stay at home in my room and it's very boring," Sok Mao. "I can't walk around or do anything."

After his first injection, the swelling in his leg has gone down and Sok Mao can now return to school.

The medication received so far is expected to last at least two years and will allow him to continue his schooling at this critical time in his education.

On a picture he drew for Steingruber, Sok Mao wrote, "I would like to thank you always for all of my life."


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