Alex was born on 5th October 2008. It was a normal delivery, and all the checks came back fine. We came home from Walsgrave Hospital, Coventry, on the same day. Everyone was very excited at the new arrival, and our home in Rugby was inundated with visitors. His brother and two sisters were overjoyed.

Alex always seemed to be a little chesty, but it was put down to a little bit of flem at the back of his throat. We were told that once he started moving the flem would clear itself.

As the days turned into months Alex came on in leaps and bounds. Well I say that, mentally he was very forward. He was smiling when he was 4 weeks old and giggling when he was 8 weeks. He was alert and would look for voices, only his body didn't seem to do much. By the time we hit his first Christmas I was getting worried. Alex showed no signs of wanting to roll over, he didn't move his legs and his arm movement was like that of a newborn, very jerky and with no coordination, except for when he was in the bath, his favourite time of day.

I spoke to the Health Visitor who assured me that 6 months was the magic number. Maybe I ddn't push hard enough. By now Alex has started to be weaned. He was very early, but completely ready. Every new taste brought a new delight. He definitely had his favourites.

A couple of months passed and I was beginning to get very concerned. He had a chest infection that wouldn't go, and he was struggling to take his milk. We decided to take him to the doctors where he was referred to the hospital.

On seeing the Consultant we were told we had a very sick baby. He was admitted for tests. Things went wrong very fast.

Alex was given an NG tube to help him take his milk. He was very dehydrated by the time he was admitted. The nurse gave him 4oz of milk while he was on my knee. I watched as Alex turned blue, and with horror as he was laid on his cot, then with fear as the panic button was hit.

Alex had aspirated. He had stopped breathing. Time moved in slow motion as the medical team worked their hardest to save his life.

Seconds felt like minutes...

Minutes felt like hours.

We were finally told that Alex was breathing again, but he was struggling. He was going to be ventilated. That also meant going to a different hospital. We were transferred to Glenfield P.I.C.U in Leicester.

Tests continued. Two weeks later the results were back. Could it get much worse? Alex had a rare genetic disorder called Spinal Muscular Atrophy (SMA). He had the worst strain, Type 1. There is no treatment and no cure. He was going to die.

We organised an emergency baptism, gathering friends and family into the small room on the ward. After, everyone had the chance to hold him, then it was time. Alex was placed into my arms and the ventilator was turned off. We told him it was ok to go and that we would always love him

We waited...

And waited...

Finally a nurse came in to see us. It appeared Alex wasn't ready to leave us just yet. The following day we were asked if we wanted to go to the Rainbows Children's Hospice. We decided that was what we wanted to do, and we were transferred.

Rainbows is a wonderful place, full of fun and laughter and happiness. Alex decided he wanted to enjoy his time there and came back from the verge of death. He went to 'The Beach' had a Birthday Party and played for hours in the multi sensory room. This is where we found his love for music. He sang with the choir and would get cross when they stopped.

Finally though, reality hit home. Alex had a 'practice run.' We realised the time was getting closer for him and we started to see changes in him. Muscles were no longer there in his spine and round his ribs, and it was hard work for him to breath. His morphine dosage had to go up to keep him comfortable and we were giving him more and more oxygen.

But as always, Alex bounced back every time.

We knew deep down it was only a matter of time, and we were going to lose our beautiful boy.

After 18 days of being at Rainbows, at 5.30 in the morning, Alex left us to go to a better place. I held him as he took his last couple of breaths. So peaceful, and outside the most beautiful ranbow appeared.

Alex died on 6th May 2009, aged 7 months and a day. Singing and playing with the Angels.

Alex Camwell 05th October 2008 - 6th May 2009