Macsen is a beautiful little boy.  He was originally diagnosed with cerebral palsy, but as he got oder he has been diagnosed with an extremely rare condition call GRIN 2a.  Macsen is severely disabled and is unable to sit, stand, walk, talk, grasp or even hold his head up.  He has severe uncontrolled epilepsy which varies from day to day - on a good day he can have 8 seizures, on a bad day 40!  He also has severe reflux which causes him to vomit cyclically every day.  He is unable to feed normally and instead has a gastrojejunostomy tubbe in place to allow his food to be absorbed through his small intestine.  Macsen also has a condition called Cortical Visual impairment which means that his brain has difficulty processing what his eyes are seeing.  Macsen requires 24 hour care because of his extremely complex needs.

Your donations will be used to purchase Macsen specialist technology,physio equipment as well as specialist private therepies, which will make his life easier and help him to reach his full potential.  Macsens parents have to do everything for him, which ius very demanding and in order tp do these things numerous specialist equipment is required.  Macsen's parents perform exercises and stretches on Macsen's limbs throughout the day to loosen his limbs and help ease his discomfort.  Macseen sees an amazing NHS physio therepist once a week who uses specialist equipment and techniques to develop Macsen and ease his problems.  He really responds well to his therapy, but would benefit from using these tools throughout the week.

His Cortical Visual impairment means that his brain has difficulty processing images.  Over the last year Macsen has developed is vision significantly.  This has done using looking techniques, simple toys and visiting dark sensory rooms with specialist lighting equipment.  Macsen;s health proffesionals have advised that the more he is stimulated at an early age the more his vison will develop, his family would like to create him his own sensory rooms at home.  Macsens additional physical needs means everyday items such as tables, chairs and toys are unsuitable.  Macsen's family are creating a therapy and sensory room for Macsen.  We are asking for your support to raise money for specialist equipment including a P-Pod seat, physio bench, fibre optic sensory equipment and physio equipment recommended by his therapist.  You will be helping Macsen to get the best start in  life possible to help him reach his potential.  We can't thank you enough for showing your support to our little boy, thank you once again.