Helping Macsen to Reach his Potential

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Macsen Williams is an amazing little boy.  He was born with a very rare condition called GRIN2a which was only diagnosed when he was five years of age.  Previously he had been diagnosed with cerebral palsy. Macsen's condition is extremely complex and his symptoms can change daily.  He is unable to sit, stand, roll, walk or talk.  he cant use his hands or legs meaningfully.  Macsen has a condition called Cortical Visual Impairment which means he is registered blind (we think he can see around a metre in front of him but are unsure as to what exactly he sees).  Macsen has intractable vomiting which means he has vomited every day of his life since he was born.  His stomach doesn't work properly and he is fed directly into his small intestine at a very slow rate via pump.  Macsen also has scoliosis (curvature of the spine) and something called laryngomalacia (a floppy larynx) both of which impact his breathing.  Macsen has intractable epilepsy which means epilepsy that cant be controlled.  his seizures have a huge impact on his day to day life as he has them every single day. 

His parents have to do everything for him as he requires 24 hour care.

Macsen's additional physical needs means that everyday items such as tables, chairs and toys are unsuitable. 

Donations to date have provided Macsen with:

  • An eye controlled computer
  • Comfortable and supported seating as he grows
  • Specialist physiotherapy and therapy equipment

Macsen's care package has recently been removed and funds raised will be used to keep a proportion of the package running.

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