Our son Jude who is now 4 years old is an amazing character and without question the strongest person i know and i'm an exceptionally proud father. Jude was diagnosed at 5 weeks old with an extremely rare heart disease called infantile onset POMPE's disease essentially a condition that means Jude is missing a particular enzyme and as a result it causes muscle weakness which can vary in every case.

Jude has unimaginable strength and has a thirst for enjoying life to its fullest despite the hand he has been dealt. Jude loves everything a 4 year old does such as colouring, paw patrol, playing with his toys.

8 months ago Jude had a bout of pneumonia and parafluenza type 3 which meant he had to be put into a coma and as a result of this he then had to have a tracheostomy and be put onto long term ventilation. Jude has responded and adapted to his new accessories exceptionally well.