Millie has congenital myopathy and HIE grade 2. She is tube fed, non mobile and partially verbal, she has scholiosis and is on Bipap overnight with multiple different mediations to help manage her condition.

Millie's condition affects all the muscles in her body both internally and externally, meaning that they are weak and she fatigues very easily. Her respiratory system also finds it harder to bounce back from things the way we would.

We currently are 2 PA which help look after millie and go into school with her. She requires a lot of suctioning including deep suctioning.

We spend a lot on private physio in the hopes millie will walk one day, (Kids Theory Works in Colchester)

We also want to push private speech and language to help with her communication at some point.