It has been a long road for Gughi and his family, with many ups and downs along the way.

He received treatment for the longest period out of all the children treated on compassionate grounds.

The journey started in March 2013, shortly after his 4th birthday, when his family received the heartbreaking and life destroying news that Gughi had DIPG. The family sourced answers from around the world and fortunately found the team in Bristol. He had the CED system fitted in November 2014 and received regular infusions since that time.

Gughi recently had a setback when the team found that the tumour, although in control in the brain stem, had metastasised into the spine. Professor Gill reacted quickly and placed a catheter in the spine to deliver chemotherapy to the tumour site.

At diagnosis the Doctors said that it would be unlikely that Gughi would live to see his 5th birthday. Gughi celebrated his 6th birthday in March 2016!

 

Gughi birthday

It is with heavy hearts that we let you know the very sad news that Gughi passed away on 26 July 2016.

Gughi fought very bravely throughout his treatments and was able to enjoy more time with his courageous family. We will miss Gughi so much, he has given hope to so many and because of his bravery, children and their families will now have hope and a chance of survival.

Thank you Gughi for being such an inspiration and a brave, wonderful little boy.