Sam's Superheroes is happy to give a voice and platform to families affected by Febrile Infection Related Epilepsy Syndrome (FIRES) to generate awareness and share their stories. This section on our website does precisely that.
These personal stories will not only shed light on the true catastrophic nature of this syndrome, but will also lay bare the inspirational strength, courage and determination that these families have to summon up on a daily basis when faced with such tragedy. FIRES families deserve to have their stories finally told and heard.
My darling Sam and I have experienced the tragic nature of this syndrome first-hand. We were, heart wrenchingly, at the catastrophic end of the spectrum as my beautiful boy didn't survive; he developed devastating, irreversible brain damage. The nuclear bomb crater that was created when I lost Sam has opened up an avenue to take FIRES awareness forwards, in fact I consider it a privilege to do so. Families who have children living with FIRES every second of every day don't have the privilege called time. I have time and as my friends and family will attest to, and no doubt lots of other people and businesses who have been on the receiving end of it lately, buckets loads of determination and perseverance.
Another reason to promote FIRES awareness is because it is one of our charity's objectives. When Sam passed, after carrying out much research on FIRES, it was clear awareness of it was extremely low, not only amongst the general public but also medical professionals. Children who have FIRES do NOT come out of this unscathed, their disabilities are life-changing for them and their families. FIRES comes out of the blue in previously healthy children. It is the most HORRIFIC and CATASTROPHIC syndrome which seems to fade into the background of other life threatening childhood illnesses. We need more research to try and stop this syndrome in its tracks, and to get better at identifying and treating it before it develops.
Sam's Superheroes would like to play an active role in generating awareness and be able to give a voice to FIRES families.