We say a lot of thank you's in various blog posts, but our biggest thank you goes to Dr Bindu from Northants General Hospital and Dr Shaun Wilson from The John Radcliffe Hospital, Oxford.

Our beautiful brave Alfie bear sadly passed away at 1.15 yesterday afternoon with his Mummy and Daddy by his side.

Our Alfie bravely fought until the bitter end, a true inspiration to us all.

Alfie is now free of DIPG and has earned his angel wings.

Our Alfie

In the last week we have noticed a steady deterioration in Alfie's condition, his breathing has become a struggle and has been rattly with him purring like a cat at times.

Our Alfie

In the last update we told you nothing more could be done for Alfie’s tumour, this hasn’t changed, yet such is his character he keeps smiling. We’re having weekly visits from the hospital consultants and the Macmillian nurses, they are monitoring Alfie’s condition and generally keeping an eye on us all.

Having previously all but lost the use of his right arm and hand, in the last week Alfie has had a few problems holding things with his left hand, despite the frustration, he keeps smiling.

Our Alfie

We have put off updating Alfie's pages this week, I guess we just couldn't find the words.

When we set up Alfie's page, we did so because we wanted to raise awareness of DIPG by sharing our Alfie's journey.

Alfie has had many good months, but it would not be an awareness page if we only made people aware of the good, which is why we knew we had to sit down and write this.