My little girl, Siti Hazwani, was born on January 15th 1998, weighing 2.93kg (6lbs 7½ oz). How beautiful life was after a year and a half of waiting to hold our first baby in my arms. The birth wasn't easy: I had the struggle of my life in the labour ward all night, eventually having to have a ceaserian delivery. When I woke up in the ward, my husband was beside me and I was so happy to see my baby girl. After a week in hospital, I took my little girl home. All seemed as it should be.

When she was 2 months old, I started to notice that her movement was very gentle. I convinced myself that it was because she was still small - I didn't want to think anything was wrong. At 4 months of age, I started to feel worried because her neck was still soft and her movement was slow. At the development check-up at clinic the doctor noticed something was wrong with her. They put her on her stomach and she could not lift her head up. They said to try next month; still the same: not much improvement. I started to worry for her.

Now the doctor referred her to hospital about her condition. At the hospital, the doctors examined her. At first, they took only her blood. When I went for the next check-up they referred me to a genetic specialist. She told me that my little girl had been diagnosed with SMA Type 1. I could not believe that it had happened to my girl. I had not heard about this disease before and couldn't understand how my little girl could get it. For confirmation the doctors still wanted to do further examinations. A muscle biopsy and the other tests confirmed she had SMA Type 1 and there was no cure or treatment for her.

Life still continued as normal, she had checkups at the hospital every month. She got a fever but no signs of breathlessness. I only give her medicine - after one or two days she was OK. She did not give me any more trouble. I took her outside every afternoon: she loved to be carried on my shoulder.

One day when we went to see the doctor as usual, the doctor said she wanted to discuss something. She asked me to brave because she was going to tell me about my little girl's future. I felt total shock when she said she was not going to live for much longer. I never realised this could happen because the doctors had been hiding the whole truth from me beforehand. Also I never got much information about SMA. The tears flooded out.

Before I was told everything about SMA, I never thought I could lose her. I was just so very happy to have her, although she was 'not normal'. I thought I could look after her my whole life. After the truth was out, everyday my heart was breaking and I was always scared of suddenly losing her. Everyday I prayed for a long life for her. I didn't think I could take it if I had to lose her one day.

The nightmare came true: one night she kept waking up and crying. I put her on my shoulder in the position she loved. She went back to sleep and I wanted to put her back on her bed. Suddenly she woke up again; this time her face looked pale and she was breathing very hard. We took her to hospital on the spot. Yes, they admitted her to the ward. She was put on a mask and saline. Seeing her struggle for her life made me cry every time I saw her. I stayed with her at hospital: I didn't want to leave her even for a minute as I felt something bad would happen.

After three days in hospital, there was still no improvement. Her life signs became worse - each time the nurse would suction her. She also couldn't open her eye because of the mask. I missed holding and kissing her like I could before. Her shining eyes always looked at me very deeply. The evening before she died, her vital signs got worse and the doctor still continued to help her live. The oxygen saturation level dropped and her pulse raced. She became stabilised but she looked so very tired and weak. The doctor asked me to hold her. I held her in my arms and kissed her as much as I could. My tears never stopped until she fell asleep. I put her back on the bed and she went into a deep sleep. For the first time that night I could sleep well - not like before when I couldn't sleep even though I'm was so tired.

At midnight the nurse woke me up and asked me if I wanted to hold my baby. Not thinking much, I held her. I didn't notice that the mask was no longer on her face and the wires had all been taken out. I looked at her: still sleeping. After I had been holding her a while, the nurse told me that my little girl was already gone. How shocked was I? I tried to wake her up but there was no response and I knew I had lost her forever. I couldn't stand it; I cried so much - I couldn't hold up anymore. She died aged 13 months on February 11th 1999, just after the celebrations of the Eid ul-Fitr (the "Festival of Fast-Breaking" at the end of Ramadan).