harry's battle with craniosynostosis

harry was born on the 9th of october 2012 at 30 weeks gestation because of placental abruption. that was only the beginning of what has been a very hard and emotional journey. harry suffers from a rare condition called craniosynostosis, when the plates of his skull fuse to early, not giving his brain enough room to grow and putting him at risk of the effects of intracranial pressure. Unfortunately this is further complicated by several neurological conditions making the usual course of treatment very dangerous.




Because of this he is having to travel to adelaide women's and children's hospital to receive specialised treatment from the australian cranio facial unit. This comes at a very high financial cost. We have just returned from ten days of appointments with various specialists to assess his case. we are now returning in a week to undergo more invasive testing including an angiogram and oximitrey study. This is the second of what will be many trips to receive the treatment he needs to be able to lead a normal life. these visits will continue well past his teenage years.



These visits include visits with a ear nose and throat specialist, ophthalmologist, neuro surgeon, cranio facial surgeon, speech therapist, neuro psychologist, respiratory specialist, pediatrician, and social worker. These visits are proving very costly and financially it is hard, but it is the only way to ensure he gets the treatment he requires to lead a normal life.