When our third son, Oscar, was born he completed our family. We fell completely in love with him.
When he was 5 weeks of age he became very ill, his lungs had collapsed and he was diagnosed with Bronchiallitus. When he became well enough to come off the ventilator we kept being told he was quite 'floppy'. Lots of tests were carried out and all came back negative.
Eventually the genetic results were back and we were given the devastating news that our gorgeous little man had Spinal Muscular Atrophy Type 1 and that very likely he wouldn't see his first birthday. Our world was turned completely upside down.
Oscar passed away the following week aged 9weeks & 1 day.
We decided to start fundraising to help other families and keep Oscars memory alive. We set up Oscar Rainbow.
We have now decided to also fundraise for the SMA Trust to help find that ever important cure.
You can read Oscars full story at oscarsrainbow.co.uk
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