Ally Cadence Trust for Spinal Muscular Atrophy
0800 23 43 762
0333 44 43 762
" Supporting families affected
  by SMA Type 1 "
" Supporting families affected
  by SMA Type 1 "
0800 23 43 762
0333 44 43 762
0800 23 43 762
0333 44 43 762
" Supporting families affected by SMA Type 1 "
 

Alex Camwell

ACT for SMA Butterfly Logo
5th October 2008 - 6th May 2009

 
Alex was born on 5th October 2008, his proud parents took him straight home where his brother and sisters were overjoyed to meet him. Alex always seemed a little chesty but his parents were told it was nothing to worry about.

As the days turned into months Alex came on in leaps and bounds mentally, but physically seemed very delayed in his movement. A couple of months later his parents were very concerned when he had a chest infection and was struggling to take his milk. They decided to take him to the doctors, and it was then that he was referred to the hospital.
 
After seeing the consultant Alex went downhill very fast and was admitted for tests. Whilst being NG tube Alex turned blue, he had aspirated on his milk and stopped breathing. The doctors worked on Alex and got him breathing again, but as he was still struggling he had to be ventilated. This meant a transfer to another hospital with a PICU unit.
 
Tests continued and after 2 weeks the results came back. Alex had Spinal Muscular Atrophy and it was Type 1, he was going to die. An emergency baptism was arranged with family and friends gathering in the small hospital room then the decision was made to turn Alex's ventilator off. His parents told him it was ok for him to go and that they would always love him. They waited, and waited but Alex wasnt ready to give up just yet.
  
Alex was transferred to Rainbows Childrens Hospice where he enjoyed the rest of his days. He went to 'The Beach' and had a Birthday Party, he found his love for music and sung with the choir. Alex got weaker and changes in him were apparent. His morphine was increased to keep him comfortable, as was his oxygen.
 
Alex passed away peacefully in the arms of his parents at 5.30am on 6th May 2009 and outside the most beautiful rainbow appeared.