HELP MATTY ON HIS JOURNEY THROUGH LIFE

Matty is 5 years old.  He has one of the world’s rarest genetic disorders.

Together we can help him experience more of the world around him.

Matty was born by emergency C-section at just 35 weeks during the height of Covid and spent his first week in NICU before finally coming home – a beautiful little boy who immediately stole the hearts of everyone who met him.

Matty wasn’t reaching the milestones every parent eagerly anticipates. After a Physio assessment, then an MRI scan followed by genetic testing, blood samples were sent to America. After months of anxious waiting came the devastating diagnosis: Allan Herndon Dudley Syndrome (MCT8), one of the rarest genetic disorders in the world. At the time fewer than 400 cases had been documented worldwide. 

The condition severely affects brain development, movement and muscle control, and at present there is no cure or treatment capable of reversing the neurological damage.

The condition is so exceptionally rare that the specialists involved had not encountered it befor...