Alex's story written by his mum Rebecca

"Back in November 2016 my eldest son (then aged 12) had been complaining of headaches and nausea/being sick over a period of a couple of weeks and was having time off school as a result. After a few trips to see his neurologist it was put down to migraine (he had previously been diagnosed with focal cortical dysplasia causing epilepsy type symptoms).

On 29th November, my son woke me up early hours of the morning screaming in pain, holding the right side of his head and vomiting/retching. I finally settled him down with some painkillers (thinking it was another migraine) only for me to get up a couple of hours later to find him unresponsive and unable to wake him up . After checking him over I noticed he'd been sick in his sleep, his breathing was laboured and his right pupil had blown.... an ambulance was called straight away, who arrived very quickly, and took us straight down to Bristol Children's Hospital a&e. He was attached to many wires, a breathing tube inserted and taken for a CT scan and straight into emergency surgery. He'd had a bleed on the brain!

The next time I saw him was hours later in ICU. I was told by the surgeon that they removed the clot caused by the bleed along with a large mass, of which a biopsy was sent off for testing. It was in the same area as his cortical dysplasia!

He made a quick recovery and only spent 5 days in hospital, and didn't need any additional help. I'm not 100% sure, and it's not been confirmed, but I'm thinking that having the cortical dysplasia meant his brain had already rewired itself anyway... so he didn't need any form of rehabilitation.

A week after he was discharged we were called back into the hospital to see a doctor in Oncology for the results of the biopsy... I've heard that word before so I immediately knew what that meant! But I hoped it wasn't that... Then the doctor dealt me the blow that's every mothers nightmare.... my child has cancer!!

He was diagnosed with a Grade 4 Glioblastoma... a fast growing aggressive brain tumour. We had no idea that it was lurking there, silently getting bigger!

He underwent a 6 week course of radiotherapy and oral chemotherapy (throughout which he dealt with it very well) which finished in February 2017, and in March 2017 he started receiving a higher dose of chemotherapy for a 5 day cycle every 28 days (12 cycles in total). Although he had days where he felt nauseous and tired, he's not letting it get him down, he told me it certainly wasn't going to let it get the better of him that's for sure! The first of his follow-up MRI scans was in April 2017, which showed all was so far so good. In July 2017 Alex had another follow-up MRI scan, this showed treatment related changes (an after effect of the radiotherapy) but all was looking good still.

In September 2017 Alex started getting seizures which were out of the ordinary, slightly different to ones he had experienced before, and was seen by one of his doctors. His 3rd follow-up MRI was brought forward as a result. On the day he was due to start his 7th Chemo cycle we were given the results of the scan. We received the devastating news that the cancer had returned in 2 other areas of his brain. It’s in an area that is inoperable and the chemo treatment he was receiving hasn’t worked so he is no longer receiving this. Unfortunately there isn’t any further treatment available and radiotherapy isn’t possible as it’s been less than year since he last received it. At this point there’s not much more that they can do for him now apart from manage his seizures and keep him as well as possible for as long as they can.

We’ve been told that we just need to make the most of the time we have now. They don’t know for certain how long he’s got but they have said it’s months and not years. He’s due to turn 14 in January!"

Thank you so much for reading their story, we are now trying to raise as much money as possible for Alex to complete his wish list before he can no longer do those things.

I have known Alex all of his life, we now live miles from each other so im doing this to try and give him the chance to do all the things he would like to do, this has been so hard for him and his family and friends.

Anything you can donate will help, thank you so so much.