We fund animal assisted & creative therapy, FIRES research & support FIRES families in memory of Sam who died age 5.
Febrile Infection Related Epilepsy Syndrome
@IoannidouEvang Words can't express how much we appreciated having you all there. Everyone was so touched you came all the way from London to support us. Thank you for giving us all hope and for your dedication to #FindACureForFIRES
@NCHPlayService@JustGiving Jaime has been utterly phenomenal part of Sam's big scoot team. She led team Joy Riders - for the full 3 days keeping us motivated, safe and on track. And she has raised incredible amounts of money too! We are incredibly blessed to have her as part of our scoot team 🛴🥰🌟
It's all about the love between a boy & his dog 🐾💖 Sam's dog, Daisy, is up for a BBC Make a Difference Award in the animal category for her Therapy Dog Work. She helps children manage all their big emotions, physical & neurological disabilities, dog phobias & more #proud
@ADanielle1994 @thismorning@catdeeley What a thoughtless, flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures, they caused catastrophic brain damage. To see your child have seizures is horrific and they can be deadly.
Would you joke about any other life changing condition or life limiting disease? My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures they caused catastrophic, irreversible brain damage.
https://t.co/FNZPGNRVPo
@epilepsysociety@catdeeley@thismorning What a thoughtless, flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures, they caused catastrophic brain damage. To see your child have seizures is horrific and they can be deadly.
@1985Deanne@catdeeley@thismorning What a thoughtless, flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures, they caused catastrophic brain damage. To see your child have seizures is horrific and they can be deadly.
@epilepsyaction@catdeeley What a thoughtless flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures, they caused catastrophic brain damage. To see your child have seizures is horrific and they can be deadly.
@Metro_Ents What a thoughtless flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome, after 7 weeks of uncontrollable seizures, they caused catastrophic brain damage. To see your child have unrelenting seizures is horrific and they can be deadly. Sam's mum ⚡
Thank you to everyone who supported our Sam's Superheroes stall today at Mickleover Fete! We raised £384.10 for UK children's FIRES research, with our running total standing at £1,675! Loads more challenges and fundraisers coming up, so watch out!
@BrainImagingLiv @EpilepsyInst Meeting the people (aka SUPERHEROES) last night who are trying to change and save lives was inspiring. I'm so thankful to have been invited to share Sam's story and support the FIRES researchers. I hope in the not to distant future a cure for FIRES will be found. Sam's mum 🌟⚡
@sk_wright It was a privilege to supporting you in your life saving research 💖 it was so interesting to learn more about your research as well 🌟⚡thank you from me and SAm 🌟
@NCHPlayService@JamieLeePhilli5@nottmchildrens@nottmhospitals Thank you so so much for coming along and supporting us Jamie-Lee. I cannot begin to express just how much this meant to me, and I know it will have done to Sam too. 🥰 Sending love and the biggest of hugs 🥰 xxxx
@NCHPlayService@nottmchildrens It was super lovely to meet you both! I can't begin to tell you how excited we are after our meeting.. Lots of plans in the making hopefully resulting in lots of SMILES on children's faces! It is an honour to be able to support the invaluable @NCHPlayService in some small way!