Jenson & Layla Our story-We are Gabi and Ed and we have two beautiful children Jenson who is 7 and Layla who is 5.

Both Jenson and Layla have been diagnosed with Dravet syndrome and have been through so much already in their little lives.

They both suffer with seizures which can range from 1 minute up to 2 hrs which we have experienced with both Jenson and Layla and due to the seizure being so long and the amount of medication Given to stop it they have ended up spending time in intensive care, which for parents is absolutely heartbreaking to watch.

The seizures are so unpredictable and can happen at any time, there is no warning.

We have regularly physio to help with their mobility issues and we do daily exercises to help with this. With them having low immune systems they pick up a lot of bugs which can trigger seizures due to the body being under more pressure to fight off the infection.

Due to them both being on a lot of medication to help them control seizures this makes them Both very tired so some days they are needing that extra rest or even a sleep to keep them going throughout the day. Jenson especially has a lot of side effects to the medication which can affects his appetite and then he loses weight. It's so hard to get it right with them also growing all of the time.

They have so many daily struggles but they still do everything with a smile on their face and they don't let this stop them having a go at new things and we as parents do as much as we can with them so they don't miss out.

There are certain things we cant do with them which is totally out of our control and that is take them on a special holiday, we can't fly due to it affecting seizures and getting the help if anything happened and just to insure both of them, would cost too much.

This dream holiday would mean the absolutely world for us and it would be almost safer for the children.

Max’s Story-Max is 14 years old. He is in Year 10 at wellacre . He is funny, clever, a little sarcastic at times but he has a huge heart and is very kind.

on the 26th May His mum took him to A&E where they met his dad Max became disorientated. The doctors became concerned about his breathing and believed he may have had a seizure. Max was put in an induced coma and was intubated with a tube to help him breathe. This all happened so fast and was terrifying. It was unknown what was wrong, however an x-ray showed a large mass on his chest which was affecting his lung and it was believed he may have Leukemia.

Max was transferred to ICU at Manchester Children’s Hopsital via an ambulance and following scans and a biopsy it was confirmed that Max had T-cell Acute lymphoblastic leukemia (ALL).

Max went from being an active and strong boy to being in ICU. This was a terrifying time for Max’s parents who did not leave his side.

Max remained in a induced coma for 5 days. The consultant felt this was the safest way and Max began treatment which included lumber punctures, bone marrow aspirations and 4 different types of chemo including one into his spinal fluid.

Max is a true fighter and even the sedation couldn’t keep him down! He would hear his parents voices and try and wake up.

It’s a long road ahead for Max with the treatment for ALL being very intense for the first six months and then maintenance chemo continuing for 3 years.

Max remains in hospital for his treatment but is allowed home when well and his family is hopeful he gets his ketones down He has a sister, 2 dogs and a tortoise who he misses very much and they miss him too.

Despite this, Max is being strong, he is building his strength and he is showing what a true fighter he is.