IT has been six months since his daughter died, but the pain of losing her is still fresh.

So when Mr Steven Yap read about the plight of Shu Qin on the Electric New Paper last Monday, he e-mailed us to share his story and offer comfort to the girl's parents.

The girl in that report, who has to undergo chemotherapy to battle her stage four neuroblasma cancer, reminded him too much of his daughter, Yap Tung Yan.

Little Tung Yan was the younger of Mr Yap's two daughters.

She died from complications arising from thalassaemia last August.

Thalassemia is an inherited blood disorder and it affects the production of a protein in red cells called haemoglobin, which in turn performs an essential function of conveying oxygen.

The Yaps have an older daughter, Ying Yan, 9, who is healthy.

Tung Yan was diagnosed with thalassaemia when she was a year old.

PALE, POOR APPETITE

Mr Yap, 39, said he and his wife had taken her to a doctor after noticing that she always seemed tired, looked pale and ate very little.

The doctor suspected that she had the blood disorder.

Said the broker, a Malaysian who works in Singapore: 'The doctor suggested we test her for thalassaemia.'

So they underwent a haemoglobin electrophoresis - a test to check for the presence of thalassaemia.

They also went to Kuala Lumpur's University Hospital for a second opinion.

His wife, who works in a bank in Malaysia, takes care of the children while he is in Singapore working on the weekdays.

Mr Yap takes the coach back every weekend to see his family.

At the University Hospital, they met a consultant who then broke the sad news - that his daughter has thalassaemia major.

That meant Tung Yan inherited two thalassaemia genes - one from each parent who has thalassaemia minor.

Said Mr Yap: 'I remembered my wife telling me before we got married that she has thalassaemia minor which means that she is a carrier, not a victim of the condition.

'But I was complacent and never thought, for a second, that this would matter and so I didn't take the test.

'Now, I really regret this.'

The chances of them producing a thalassaemia major baby was about 25 per cent.

A bone marrow transplant could cure Tung Yan but if she did not do it, she faced a lifetime of blood transfusions and medication.

CORD BLOOD TRANSPLANT

While they pondered the transplant option, Tung Yan was given pills every month to boost her immune system and bring her red blood cells up.

The turning point came when Tung Yan was 4 years old in 2006.

'We noticed she was really skinny for her age and she was not as tall as she should be,' said Mr Yap.

This was when they decided to do a transplant to cure her completely. The Yaps opted for cord blood transplantation.

Instead of harvesting stem cells from a donor's bone marrow or blood, stem cells are taken from the 'cord blood' found in the umbilical cord and placenta of a newborn.

Doctors secured one from the US. For that, Mr Yap paid some RM85,000 ($37,000)

He said: 'I just wanted my little girl to have a normal life.'

'I just wanted my little girl to have a normal life.' -Steven Yap

On 23 Jul, she went for a week-long chemotherapy to lower her white blood cells in preparation for the transplant.

Then, on 2 Aug, she went for the transplant. But hope soon turned into despair.

By this time, Mr Yap had gone back to Singapore after being by his daughter's hospital bedside for about two weeks.

His wife called him and it was a call he would not forget.

She simply told him: 'You better come back. She's not doing well.'

He immediately got on a bus that Monday night and reached KL at 4am, just in time to see his sickly daughter gasping for air.

Tung Yan was wheeled into the intensive care unit and hooked up to a respirator to help her breathe.

She kept slipping in and out of consciousness.

On the fourth day, when both Mr Yap and his wife had gone home to catch three hours of sleep, his brother called him and told them to rush to the hospital.

'When we got there, I knew something terrible was happening. The respirator was moving slowly and lower, and she was barely conscious.'

ARE YOU ANGRY?

He remembered his wife asking Tung Yan, 'Are you angry at us?', and she said no.

Then she slipped into unconsciousness.

Mr Yap said: 'I shook her and screamed, 'Come back'. She seemed to move a little, then she was still.

'I couldn't believe it. It was unreal. My wife was crying uncontrollably.'

It was only when he got home that reality sank in.

Grief overwhelmed him as he punched the doors of his house and cried over his daughter's death.

He said: 'I blame myself for not checking on thalassaemia. I was just so angry with myself.'

Till now, he cannot look at pictures of his daughter without feeling guilty. His guilt has spurred him to make others aware of thalassaemia.

He said: 'I did not realise how serious it could be. I want couples to know more about this and at least be prepared, instead of suffering the pain I went through.'

This story was first published in The New Paper on Feb 12, 2008.

Related story:

Shu Qin's story