Tobin’s Story

Tobin’s video is a joy to watch as he makes a remarkable recovery from ANE. His family who live in New Zealand have been hit very hard with ANE. Tobin’s older sister Lucia has had multiple episodes of ANE including one triggered by Chicken Pox and has suffered severe outcomes. This family have 4 children and all have the genetic mutation. Tobin’s parents were told at one point to take him home to die. Today he is an energetic young boy who has just celebrated his 7th birthday with his twin sister.

 #ANEawarenessday #RanBP2 #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy  #patientstories   #kiwistrong  #notmycircus  

Find out more details at:


We are on social media, you can follow us at:






Please visit our  ANE Awareness Store

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.