Today is a tough memory day, bitter sweet. Sam and I went on our last holiday together this time last year, with our very special friends Becky and her daughter Holly.

We went to Norfolk staying in a Safari tent for five days, and what a fabulous time we had. We were so lucky that it didn't get cancelled due to all the covid-19 lockdowns. This photo was taken on route having a picnic (or pignig as Sam liked to call them), in the car next next to Sandringham estate. Holly is on Becky's knee but I removed her from the photo, for privacy.

We had booked lots more holidays with Becky and Holly this year, and it's simply heart wrenching knowing all the exciting plans we had ahead. My head can't quite grasp that when we took this photo we had no idea that my son would not be with us in less than six months time. That he would have such horrific and catastrophic times ahead of him. We were so blissful in our ignorance. It breaks me to think about it even for a second.

People think childhood cancers are one of the worst things a child can face medically wise; childhood FIRES needs to be sitting there along side it. It can catastrophically destroy a child's neurological function in days, leaving them chronically impaired with life changing disabilities or in some cases a life of minimal consciousness, facing chronic life long drug resistant seizures and numerous hospital stays, or leave parents facing the decision that no parent should have to face, of withdrawing life support for their child as their brain damage is so catastrophic.

No child with FIRES gets out unscathed, their life and their family's life will change for ever. The damage it can cause is horrific, and this happens to previously healthy children with no history of seizures, or underlying conditions.

From the moment Sam had his first seizure I never heard him speak again, and I don't know if he could hear me say how much I loved him, how proud I was of him, and how much I love him more than life itself.

This is why Sam's Superheroes is so important to me; why I need to try and make a difference to people's lives through our initiatives and funding assisted animal therapies, trying to promote FIRES research and awareness. It comes down to trying to make my son proud, protecting his memory and wanting to sprinkle some of Sam's light in this pitch black darkness. I know my superhero boy would want me to do that.

I hope this blog post isn't too upsetting. I consciously try to ensure they are positive most of the time, but sometimes the horrific hell that Sam went through due to childhood FIRES needs to be voiced.

Hug your children that little bit tighter; remember life and getting older is an incredible blessing, which is a denied to many.

Love you Sam.

Sam's mummy

xxx