All About Lewis

Lewis is 7 years old and has been diagnosed with severe Quadraplegic Dystonic Cerebral Palsy, Severe gastric problems, epilepsy, Gastro Oeosphaegel Reflux Disease, Gross Development Delay, Periventricular Leukomalacia, early myopia and has recently been diagnosed with Pancreatic Agenesis & Laryngomalacia.


It took 2 years to diagnose him and he spent 8 months in hospital due to the complications that he has.

He is fed via a Gastro-Jejunostomy PEG (Percutaneous Endoscopic Gastro - jejunostomy) which feeds him directly into his small bowel due to an unsafe swallow & severe gastric irritation. He is attached to a feed pump for the majority of the day.


He has a central venous catheter (a hickman/central line) in the right side of his chest, which gives us direct IV access.


He is such a smiler, full of love and laughter, yet cannot live life the way we would all like him to.


He is unable to sit, walk or talk but he is such an amazing little man. He will smile to all those around him and loves being sung to, watching Chuggington and watching his big brother Adam playing.


Despite his life being limited due to all his problems, we will do anything and everything to keep him smiling!!!


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