MISSION ACCEPTED!

We are embarking on a fundraising mission to raise £50,000 to fund children's medical research to help find a cure for FIRES (Febrile Infection Related Epilepsy Syndrome).

We want to make Sam, my son, one of the last children to lose his life from from this catastrophic, horrific and cruel syndrome. This research is vital to save other children and families from having their lives destroyed like my family.

It's not yet known what causes FIRES and there is no known cure. FIRES can happen to any child. It occurs out of the blue, in previously healthy children with no history of epilepsy - and it is catastrophic - the nightmare of all nightmares. Children do not come out of this unscathed. One in five children will die in the acute stage and the remainder will have significant life changing neurological disability and life long epilepsy. It is thought to be triggered by a rare reaction to a routine virus. It's something that I had never heard of before.

Please support my fundraising to make no other child or family suffer what happened to us. I thought something like this would never happen to my child...but it did.

Our First Challenge

Our first fundraising challenge kicks off on Friday, 20th September 2024. We have a team who are carrying out an EPIC KICK SCOOT from Aston University in Birmingham, home of the first UK FIRES research, to Sam’s hometown of DERBY. We will be covering 50 miles over three days fuelled on pure muscle power and sheer determination!

BBC news article on our Scooter Challenge: click here

Contact us at: rachel@samssuperheroes.co.uk

Follow us on social media to get regular updates:

- Facebook @TeamSamsSuperheroes click here

- Instagram @ SamsSuperheroesTherapyDogs click here

- Website: www.SamsSuperheroes.co.uk click here

Our team includes NHS Doctors and Research Fellows from Great Ormond Street Hospital and Aston University Birmingham, who are the experts at the forefront of UK children’s FIRES research.

We have a core team who will scoot for three full days, plus a tag team will join for half or full days. On the final day, many more of Sam’s friends and Sam’s Superheroes supporters will also scoot with us as we make the final journey into his hometown. Sam is the heart and soul of this challenge, he adored his red scooter and rode it everywhere. I will be carrying that scooter on my back throughout the challenge, ensuring Sam is very much a part of the team!

Here is a photo of our gorgeous Sam with his famous red scooter!

Here are some examples of scooters we will be using in our challenge!

What is FIRES?

FIRES, or Febrile Infection Related Epilepsy Syndrome, is a rare and catastrophic condition that affects healthy children with no prior history of epilepsy or seizures. The seizures begin suddenly and explosively following a simple febrile infection or virus, rapidly progressing into relentless seizure activity that is exceptionally difficult to stop. Children may remain in an induced coma for weeks to months, with life-changing impacts. One in five children die during the acute stage, and those who survive often suffer significant neurological disabilities and life-long epilepsy.

It is not yet understood what causes FIRES and there are no known effective treatments. FIRES is desperately under-researched, with the first and only UK research study starting in 2023, funded by the Epilepsy Research Institute UK.

Back in March 2021, a few weeks after Sam’s 5th birthday we were suddenly catapulted head-first into the fight of all fights to save his life from the sudden onset of FIRES. Although we didn’t know it at the time, the weekend of the 19th March 2021 would mark the beginning of the end to our perfect, yet ordinary family life. Sam had what we thought was a normal childhood virus, although it was somewhat unusual in its presentation with a high and difficult to control temperature and a strange red rash on his cheeks. Throughout the coming days we sought medical advice, and all thought it was just a routine virus. On the fourth day, we thought he was getting better, but his high temperature suddenly returned and just minutes after arriving home from a doctor’s appointment Sam had his first ever seizure. He then proceeded to seize without regaining consciousness for 35 minutes.

Sam was immediately taken to hospital and went on to have further seizures. Within eight hours he was placed into an induced coma as he went into respiratory arrest; I was terrified at what was happening - I thought Sam was going to die. Sam was quickly transferred to the critical care unit at Queens Medical Centre Nottingham, a neurology centre to receive the expert care he so badly needed.

Sam’s team initially felt his outlook was positive. It was thought an infection was the root cause of his seizures and there was a huge protocol of medication he could be given. However, 24 hours later and after a whirl wind of activity around him it was clear stopping his seizures was proving an impossible task. And his team were also struggling to keep him stable. Whilst medications would initially work, his brain seemed to find a way round them and his seizures would restart again. It was utterly terrifying.

We were witnessing things no parent should ever have to see and hear and were watching on helplessly as our child continually seized and was kept alive by machines. Every single day was a roller coaster as treatment after treatment didn’t work. Sam was fighting for his life day in and day out, alongside his awesome medical team.

Trying to stop Sam's seizures whilst keeping him alive was hugely complex, he had multiple medications, innovative treatments, and complications. But after seven weeks in critical care despite all of these treatments, despite the world leading care and despite the non-stop fight of our son and everyone involved, we just couldn’t stop his seizures. It was acutely distressing not only for us his family, but for everyone involved in his care.

After his fourth MRI scan, Sam’s team said the heart-stopping words no parent should ever have to hear. Sam had catastrophic, irreversible brain damage and they felt it was in his best interests for his life support to be withdrawn. The damage the seizures had done to his brain was just too great and meant that Sam would never have any meaningful recovery. And so, in the space of 7 short weeks our entire world had fallen apart and was destroyed by a syndrome we had never heard of before and which had no known effective treatments.

As parents who loved our son so very much, we had a responsibility. We couldn’t allow him to suffer any more than he was and wanting to do what was right for Sam supported his team’s decision, despite our feelings of utter heartbreak.

To put it bluntly this syndrome is every parents worst nightmare. Whilst it is rare, there are children currently fighting FIRES in the UK; with two in the East Midlands area alone. We need to #FindACureForFIRES to stop other children and families from having their lives destroyed by this horrific syndrome.

To learn more about Sam's FIRES story click here .

Here is a photo of Sam and Daisy dressed up for Halloween in October 2020! Alongside it is a photo from April 2021 from when Daisy was visiting Sam in paediatric critical care at Nottingham's Queen's Medical centre.

Below is another photo of beautiful Sam in paediatric critical care. Sam was on multiple medications and innovative treatments to try and stop his seizures. Whilst medications would initially work, his brain would find a way round them and start seizing again. FIRES is utterly horrific and is the nightmare of all nightmares.

About Our Sam

Sam was beautiful, kind, loving, caring and joyful. He adored cuddling up to his dog Daisy and exploring the great outdoors. Shy with people he didn’t know, he was articulate and had wisdom beyond his years. Sam loved superheroes and making his family and many friends laugh! He was a healthy child and rarely ill, but just after his 5th birthday, Sam and our family were catapulted head-first into a battle to save his life from the sudden onset of FIRES. After a seven-week fight in paediatric critical care at Queen’s Medical Centre in Nottingham, our beautiful Sam passed away due to catastrophic and irreversible brain damage, caused by his relentless seizure activity.

Here is a photo of Sam modelling his new school uniform at his nana and grandpa's house in Blackpool. He was so excited to be starting Primary School. Sam fell ill just over six months later.

A few more beauties of our boy!

Our Supporters - NHS Doctors & Researchers

We are thrilled to be partnering with an incredible team of NHS Doctors and Research Fellows from Great Ormond Street Hospital and Aston University, Birmingham. These experts are at the forefront of UK children’s FIRES research and some of them are shown in the photo below. This photo was taken at the UK's Epilepsy Research Institute's 'The Promise of Research' Reception, held at the Francis Crick Institute in London, May 2024.

Left to right: Dr Marios Kaliakatsos, Dr Sukhvir Wright, Rachel Liew - Sam’s mum, Dr Evangelia Ioannidou and Dr Dimitrios Champsas

Dr Ioannidou Great Ormond Street Hospital, London says:

Dr Kaliakatsos, Consultant Neurologist, Great Ormond Street Hospital, London says:

Our Supporter - Bex Band, Adventurer

We are incredibly grateful for the support of the renowned Bex Band, an adventurer and founder of ‘Love Her Wild,’ the UK’s largest women’s adventure community. Bex is a bestselling author and blogger, with her website attracting over 1.4 million visitors. She is a true kick scooting pro! Bex says:

www.TheOrdinaryAdventurer.com click here

Sam's Superheroes Foundation

Sam's Superheroes were established to ensure Sam’s life continues to make a difference in the world for years to come. We fund animal assisted therapies and creative activities, support FIRES research and offer grants to families affected by FIRES. We recently applied to become a registered charity.

Sam's Dog Daisy

Daisy, Sam’s black labrador, plays a leading role in our charity through her transformative Therapy Dog work with young people. She came into Sam’s life as a puppy, when he was two years old. It was love at first sight and they were joined at the hip from that point onwards! She is loving, kind, joyful, calm and caring - just like Sam.

Daisy makes astounding impact in her work, connecting with children in ways adults simply can’t. She spreads Sam’s love and energy in the world and makes children smile wherever she goes. We are proud she has reached the final of BBC Radio Derby’s Local Hero Awards 2024 for her work. The final will be held in September so watch this space!

A photo of Daisy and Sam joined at the hip!

The day Daisy joined our family!

Sam and Daisy playing together on holiday in the Lake District

Sam's Mum

Since Sam died, Sam's mum has been committed to #FindACureForFIRES. She has shared Sam’s FIRES story with doctors, researchers and the wider community to raise awareness and support the critical need for research. As part of this she even shared personal diary extracts click here from when Sam was fighting FIRES in hospital.

In 2023, she was a guest speaker at the NORSE Institute International Conference click here

This year she also shared Sam’s story at the UK's Epilepsy Research Institute Reception in London. click here.

To read more about Sam's FIRES story click here

Thank you from me, Sam's Mum

Every single bit of support we receive is gratefully appreciated.

By supporting, you are not only helping save children's lives, but you also helping a mum survive the unsurvivable; 'the death of her child'. I am surviving the only way I know how by putting all my pain and overwhelming love for my son into a purpose; my son's charity, Sam's Superheroes Foundation, and #FindACureForFIRES.

Please do remember it‘s more than just financial support, every 'share' you give us to raise awareness is massively important too. And, we are also looking for support from individuals or businesses who can provide RAFFLE PRIZES, products, merchandise or equipment, this list is endless. Or, you could even arrange your own local fundraisers?!

Please drop us an email at rachel@samssuperheroes.co.uk if you have any ideas of how you can help.

#FebrileInfectionRelatedEpilepsySyndrome #SamsSuperheroes #SamsBigScoot #EpilepsyResearch #FIRESResearch #SamLiew #RachelLiew #FindACureForFIRES #TherapyDogs #EpilepsyResearchInstitute #NORSEInstitute #EpilepsyResearchInstitute #ChildrensResearch #SaveChildrensLives