A MOTHER’S EXPERIENCE
In 1984 my eldest son, Philip, was born. We were full of joy and happiness. Four months later, he got sick. We brought him to see a child specialist. The Doctor, seeing that he looked so pale, did a blood test on him. She found that his blood hemoglobin was only 7.8 g/100ml. The norm being 12 g/100ml. Philip was immediately admitted to the General hospital for further observation and test. Later we took him to Singapore University Hospital for the check-up. When the Professor saw his blood film he was 75% sure that Philip was thalassaemic and he followed up with a HB electrophoresis. The test confirmed that Philip was a thalassaemia major. The Professor told us that Philip needed blood transfusion every month. Since then Philip had to have regular blood transfusion until he was 16th years old. The Professor also advised that after three years, he needed to start a regime of iron-removing treatment. This is because the regular transfusion caused a slow build-up of iron, which must be arrested. This iron-removing treatment called chelation is done via a slow infusion pump and it lasts about 8-10 hours. We were even more worried when he said that we would need about a thousand ringgit per month for Philip’s medication.
We knew nothing about Thalassaemia then. We tried to read all the medical literature on the subject that we could lay our hands on. I found out that the only cure was through bone marrow transplant. Then I read in the New Straits Times newspaper that a Professor from United Kingdom who specialized in Thalassaemia had visited Penang General Hospital. She had written a clinical book on The Management of Thalassaemia. I managed to buy the book and shared it with our doctors. That book has helped the doctors and nurses to give better management to the thalassaemia patients.
As a parent, I had to bring my son to the hospital every month for blood transfusion. The procedure was very tedious and taxing and would take the best of a day. When my son was three years old, we flew to Kuala Lumpur to learn how to give him the iron chelation therapy from a pharmacist who had two thalasaemic daughters himself. From then on, I always made sure that my son was chelated six times a week. Those days were my saddest days of my life, as I had to give my baby the injection and see him crying and struggling against it every night. And I had to remove the needle in the morning. There was so much unspoken pain, tears and frustration. I had never told anybody that my son was a thalassaemia. I think most people would not understand what is thalassaemia. When my son was young, I always told him that he was special and he had thalassaemia. He needed blood transfusion every month and iron chelation therapy every night in order to lead a healthy life. He accepted it and it became a norm for him.
During the earlier days, there were only a handful of thalassaemia patients. We got to meet each other during the children’s blood transfusion. The parents we met didn’t even know that blood transfusion would cause the accumulation iron in the body and that this would lead to premature death. We shared with them our knowledge and encouraged them to start their children on iron chelation therapy but most of them could not afford it, as the drug was very expensive.
It was in April 1994 that the Sarawak Thalasaemia Society was formed to give moral support and to raise fund to help the less fortunate families. In the same year, we attended the Asean Thalassaemia Congress in Penang. From this Congress, we not only got a lot of information on this medical condition called thalassaemia but we were also greatly encouraged and motivated from the support from the families and medical personnel. We knew that we were not alone. We learnt from the Penang Thalassaemia Society how they organized themselves to raise funds. In Sarawak, the thalassaemia families had no experience in organizing. So we decided to recruit non-thalassaemia people who had some organizational experience to help to raise funds. We are fortunate now to have a team of compassionate and energetic friends who have been helping in the Society selflessly.
In 1995, we did our first fund-raising project, a Film Premier, and we managed to raise over twenty thousand ringgit. We were greatly encouraged. From then on, we organized fund-raising Gala Dinner and Food Fair every year. At the same time we also began a campaign to raise the public awareness about thalassaemia.
When Philip was ten years old, I had my second son and he is not a thalasaemia major. We were hopeful and we took him to Singapore for the DNA matching to see whether he could match his blood marrow with his elder brother. We were disappointed. Two years later, I had my third child but we did not do anything, as she was still very young. In 1999 we were blessed with a breakthrough. During our Thalassaemia AGM, Professor Chan Lee Lee, a specialist from University Hospital was invited to give a talk on the Bone Marrow Transplant. After the talk she took the blood from all the children and parents for genetic mapping and study. We asked Professor Chan to do my daughter’s DNA matching for Philip. One month later, she informed our medical advisor that my daughter had a perfect DNA match for Philip. I cried with joy. My son had a chance at last.
But Philip was by then in his teen and all the hospitals we went to would not do the bone marrow transplant because Philip was a bit old for the transplant and thus the risk was high. When we approached Singapore University Hospital, they gave us the statistic of the success rate of the thalassaemia transplant of a medical center in Italy. It was very impressive and we decided to visit the centre. At the same time, we also read in UK Thalassaemia Society Newsletter an article about a 22-year old thalassaemia woman who had undergone a bone marrow transplant successfully. We managed to contact her through email and she kindly shared with us her experience. She gave us a lot of confidence and moral support.
So we went ahead and visited the Transplant Centre in Italy. There we met Professor Guido and also many adult patients and their families from many parts of the world. Professor Guido had performed over a thousand successful bone marrow transplants on adult patients. We felt more confident. Though there was still an element of risk Philip was ready to take it, and two months later decided to go ahead with the transplant. After five month stay in Italy Philip was miraculously cured. We were overwhelmed with joy and relief. I thank God everyday of my life that He has given Philip a new lease of life. I am also thankful to a lot of my friends and relatives who prayed for us and gave us a lot of moral support through emails during our stay in Italy.
This has been a long and hard journey, but in this journey we have the opportunity of making many good friends and meeting many good doctors and nurses. We are very thankful for this blessing.
To all our thalassaemia friends, don’t let up on the iron chelation therapy, keep on pumping for life. Life is very precious, hold on to it, a cure will come, don’t give up. God bless us all.
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