My son Louie was born in March 2012 weighing 4lbs 1oz, he was perfect.
A few months passed and everything seemed fine Louie was putting on weight and we did lots of fun things together I enjoyed being a new mum.
When Louie was 5 months old his feet had dropped and after a trip to the doctors we were referred to the hospital.
After months of tests, MRI scans, ultra sounds, blood tests they were unsure what was wrong with Louie.
Then when Louie was 8 months old on Dec 4th 2012 he stopped breathing and was rushed to hospital by ambulance.
He was transferred to intensive care after a couple of days and ended up being diagnosed with SMARD when he was 10 months old.
He was in hospital for a total of 7 months.
He came home on the 1st of July 2013 and remind well for sometime although he cannot walk or sit up, he's still always smiling.
He also now needed around the clock care as he has aspirated traceostmy and is on at machine to help him breath 24 hours ago day.
He is almost 3 years old and for the past 6 months has had 8 hospital addmissions with various gastro issues.