I'm raising £50000 to fund children's FIRES medical research (Febrile Infection Related Epilepsy Syndrome). We couldn't save Sam - we need to save other children.
Organised by Sam's Superheroes Foundation
Story
MISSION ACCEPTED!
We are embarking on a fundraising mission to raise £50,000 for children's medical research to help find a cure for FIRES (Febrile Infection Related Epilepsy Syndrome).
BE A HERO TO SAVE KIDS LIKE SAM
We want to make Sam, my son, one of the last children to lose his life from this catastrophic, horrific and cruel disease. This research is vital to save other children and families from having their lives destroyed.
It's not known what causes FIRES and there is no cure. However, it is thought to be a rare immune reaction to a routine virus. FIRES can happen to any child - striking without warning, attacking healthy children with no history of epilepsy. It triggers explosive and aggressive seizures that are exceptionally difficult to stop, which can cause catastrophic brain damage.
The disease leads to weeks or months in a medically induced coma and requires intensive, complex treatments. One in five children do not survive, and those who do are left with significant neurological disabilities and lifelong epilepsy. It is cruel and catastrophic, destroying healthy children's lives in an instant. FIRES is every parents worst nightmare and a disease I had never heard of.
FIRES is desperately under-researched, with the first and only UK research study starting in 2023, funded by the Epilepsy Research Institute UK.
Please support my mission to raise £50,000 to try and make Sam one of the the last children to lose their life from FIRES. I thought something like this would never happen to my child...but it did.
Our First Challenge
Our first fundraising challenge kicked off on Friday, 20th September 2024. We carried out an EPIC KICK SCOOT from Aston University in Birmingham, home of the first UK FIRES research, to Sam’s hometown of DERBY. We scooted over 50 miles over three days fuelled on pure muscle power and sheer determination!
BBC news article on our Scooter Challenge: click here
Below is some of our scoot team at the start line at Aston University in Birmingham. Holding the banner is (left) Dr Wright, paediatric neurologist and clinical researcher who is co-lead of the only UK FIRES research at the Aston Institute of Health & Neurodevelopment.
Our scoot team - Day 2 arriving at the Ibis Hotel Burton on Trent.
Below is a photo of Sam's mum (center) with doctors from Great Ormond Street Hospital, the UK FIRES experts. They joined her on Sam's BIG Scoot!
Here is a link to a video from the final day of our scoot - showing the torrential rain! click here
Our team included NHS Doctors and Research Fellows from Great Ormond Street Hospital and Aston University Birmingham - the experts at the forefront of UK children’s FIRES research.
We had a core team who scooted for three full days, plus a tag team. On the final day, we were joined by Sam’s friends and our supporters as we made the final journey into his hometown. Sam was at the heart and soul of this challenge, he adored his red scooter and rode it everywhere. His scooter was tied on the front of my scooter throughout the challenge, ensuring Sam was leading our challenge!
Here is a photo of our gorgeous Sam with his famous red scooter!
Sam's FIRES Story?
Sam was a loving five year old who adored the outdoors, Lego, superheroes, and his dog Daisy - a black Labrador. Known for his kindness and wisdom beyond his years, he brought joy to everyone around him.
Back in March 2021, a few weeks after his 5th birthday we were catapulted head-first into a fight to save his life from the sudden onset of FIRES. We didn’t know it at the time, but 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 - with a high and difficult to control temperature and a strange red rash on his cheeks. Throughout the weekend we sought medical advice, and all thought it was a routine virus. On the fourth day, we thought he was getting better, but his high temperature suddenly returned and minutes after arriving home from a doctor’s appointment Sam had his first ever seizure. He proceeded to seize without regaining consciousness for 35 minutes.
Sam was immediately rushed to Derby Royal hospital and went on to have further seizures. Within eight hours he was placed into an induced coma as he went into respiratory arrest. It was terrifying - the doctors and nurses were panicking and I thought I was going to lose him. He 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 was kept in an induced coma and his medical 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 that could be given. However, 24 hours later after a whirl wind of activity around him, it was clear stopping his seizures was proving an impossible task. Whilst medications would initially work, his seizures would restart again and his team were struggling to keep him stable. It was utterly terrifying.
We were witnessing things no parent should ever have to see and hear and were watching 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, his seizures couldn't be stopped. 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 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 - destroyed by a disease we had never heard of and which had no known effective treatments.
As parents who loved our son so very very much, we had to do the right thing for our child. We simply couldn’t allow him to suffer any more than he was. Despite our overwhelming feelings of utter heartbreak and devastation we knew we had to support their decision.
And so our beautiful baby boy had his breathing tub removed and passed away surrounded by love in his mummy and daddy's arms on the 8th May 2021, exactly 5 years and 2 months old. And, our world fell apart.
FIRES is every parents worst nightmare. Whilst it is rare, there are children currently fighting FIRES in the UK. 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 .
Below is a photo of Sam and Daisy, his black Labrador, dressed up for Halloween in October 2020, alongside a photo from when Daisy was visiting him in paediatric critical care at Nottingham's Queen's Medical centre.
Below is another photo of beautiful Sam in paediatric critical care. He was on multiple medications and innovative treatments to try and stop his seizures. Whilst medications would initially work, he would start seizing again. FIRES is cruel, horrific and catastrophic. If children survive, they are highly likely to have significant neurological disability.
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!
Support our fundraising and YOU can help save children’s lives...it's as simple as that!
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:
"Hope transforms into action through charity. Together, we can turn Sam's hope for a FIRES cure into reality by supporting research with our enthusiasm & donations"
Dr Kaliakatsos, Consultant Neurologist, Great Ormond Street Hospital, London says:
“The FIRES patients and their families are etched in the clinician’s heart forever. Support our fundraiser in Sam’s memory and help our research so that he is one of the last children who lose their life or childhood due to this devastating disease”
Sam's Superheroes Foundation
Sam's Superheroes is a registered charity (number 1210458). We were created to ensure Sam’s life continues to make a difference in the world for years to come. We are dedicated to:
- Funding critical children’s FIRES research to improve understanding and treatments for this devastating, catastrophic condition.
- Raising awareness of FIRES and supporting families affected by it.
- Funding life changing Animal-Assisted and Creative Therapies to help children facing emotional, mental health, and physical challenges.
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, and they were inseparable . She is loving, kind, joyful, calm and caring - just like Sam.
She visited Sam in hospital, bringing the entire family comfort and love when it was needed most. We knew she was meant to help others too. Now, Daisy and the rest of the Therapy Dog team bring joy, comfort, and healing to children and families across Derbyshire and beyond.
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.
A photo of Daisy and Sam - inseparable!
The day Daisy joined our family!
Sam and Daisy playing together on holiday in the Lake District
Me - Sam's Mum
Since Sam died, I have been committed to #FindACureForFIRES. I have shared Sam’s FIRES story with doctors, researchers and the wider community to raise awareness and the critical need for research. This included sharing my personal diary extracts click here from when Sam was fighting FIRES.
In 2023, I was a guest speaker at the NORSE Institute International Conference click here
In 2024 I 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
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. We welcome support from individuals or businesses, so please drop us an email at rachel@samssuperheroes.co.uk if you can help in anyway.
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
We could not save Sam, but we must try and save other children.
#FebrileInfectionRelatedEpilepsySyndrome #SamsSuperheroes #SamsBigScoot #EpilepsyResearch #FIRESResearch #SamLiew #RachelLiew #FindACureForFIRES #TherapyDogs #EpilepsyResearchInstitute #NORSEInstitute #EpilepsyResearchInstitute #ChildrensResearch #SaveChildrensLives
