Alfie's story

"He had the biggest smile and the most amazing laugh." 


Alfie Butler was born on 10th May 2014 and he made our world complete. He was such a happy baby, gorgeous big blue eyes and lovely long eye lashes.

We had an amazing first Christmas together enjoying our two little happy boys and family time, but sadly a few weeks later Alfie starting being unwell and after an emergency hospital admission and MRI we were given the devastating news, Alfie had a brain tumour. 

The next 10 months for us as a family were incredibly hard and mostly spent in hospital. Numerous procedures which often resulted in long periods in Intensive Care and a gruelling schedule of chemotherapy lay ahead.

In December 2015 after a relapse, thanks to the NHS we flew to America for 9 weeks for Proton Beam Therapy. Despite our hectic schedules we made the most of our time there and even managed to visit Disney World.  

Once back in the UK, Alfie through the love of Mr Tumble started to learn Makaton and began to communicate with the world which was incredible to see.

Over the next 2.5 years Alfie continued to keep amazing people with 3 monthly clear scans. Despite not physicality growing he continued to grow in character. What he lacked in size he sure made up for it with personality. 

After another relapse in July 2018 he was back in hospital having more surgery. Despite this set back, in true Alfie style he made a miraculous recovery and even managed to start ‘big boy’ school with his new peers in September. He was so happy.


Sadly, just 2 months later a routine scan showed another relapse and he was then put on palliative care.

Despite being on palliative care, the next 16 months were his best ever. At home we kept seeing him smash milestones we were told he would never achieve. Walking, his speech and appetite all improved, even his sleep improved. He became Mr Independent, learning how to dress himself and he began to understand routines, responsibilities and sometimes…. boundaries! He was ridiculously good at jigsaws, he loved having friends & family over, dressing up, playing in his kitchen or his ice cream parlour and colouring. But it was singing and dancing that gave him….and us the most pleasure. 

Alfie fought so hard right from the beginning. Despite the odds he showed the world how to be brave, strong and live life to the full. He had a huge impact on others and inspired many people.  

Sadly, Alfie passed away on 2nd January 2020.

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