Hi, my name is Libby. I’m the best friend of our beautiful Ashie. I’ve had a few of you reach out to help so I thought we would set up this page to help ease the financial burden when Ash and Jai’s beautiful brave boy is in hospital.

Words from Ashley … 

Our beautiful boy 

Yesterday we got the call that Van has been booked to have a hemispherectomy on the 9th Nov. This surgery is to completely disconnect the right side of his brain which is going to leave him with permanent physical deficits (hemiparesis) With lots of rehabilitation he’ll be able to walk again with the support of an AFO. But permanent loss of movement of his arm, hand and vision. This is the only cure for this cruel cruel disease….We have exhausted all other options Multiple medications, TWO previous surgeries, IVIG, immunotherapy and cannabis oil and if we don’t act now we’ve been told his outcome will be catastrophic. Van’s case of this disease is what they call “slow burning” but he is beginning to deteriorate, having cardiac issues, slurred speech, ongoing seizures despite being on 4 antiepileptics at the moment, motor weakness on his left side and worst of all, changes/seizure activity on his left side (healthy side). We are all absolutely devastated, it’s going to be a long rehabilitation journey but Van is absolutely phenomenal and we are praying with everything he’ll show them his resilience and bravery yet again #rassmussensencephalitis #hopeinonehemisphere