Six months ago today, 8 May 2021, the most catastrophic, earth shattering, heart-breaking event happened; my beautiful son took his last breath. I invite you to LIGHT a CANDLE in MEMORY of SAM this EVENING, take a photo and post it on our Facebook page to show your love and support for our beautiful boy.


I still can’t believe it happened, six months on. It still feels like I am living in a surreal, horrific nightmare that I can’t seem to wake up from. How I have survived six months without him, I truly don’t know.


Every single day my heart physically hurts and aches from this intense longing to see him, longing to hear him say mummy, and longing for him to put his arms around me. And every single day when I wake up, for that split milli-second in the half-awake and half-asleep slumber, I forget, and then my world comes crashing down when I remember he isn't here and that I now have to somehow survive without him. 

Even saying the words ‘my son died’ feels surreal. I feel physically sick when I think my son has died; he had his full life ahead of him. A life full of joy, laughter, friendships, family, birthdays, Christmases, holidays, adventures and exploring. The list is endless. We were blissful in our ignorance of how long we thought we had with Sam. When I look at the photos that I took of Sam on his birthday on the 8 March, my brain can’t comprehend that just a few weeks later he would be fighting for his life and then just over two months after that he would be dead. My son dead? Those are words that no mother should ever have to think about, utter, or come to terms with. He was a healthy five year old boy, what on earth happened? I always tried to keep Sam safe, give him nice experiences, give him lots of cuddles, tell him I loved him daily, made sure he ate well and healthily and take him to the doctors at the first sign of him being ill. Life truly feels cruel, unfair and unjust, and my world feels destitute, empty and pitch black without him.


I have so many unanswered questions about what has happened, and I doubt that we will ever get the answers that I need and long for. For not enough is known about FIRES (Febrile Infection Related Epilepsy Syndrome). We don’t truly know what triggered it in the first place. Well we can give an educated guess, possible causes may ultimately be autoimmune and inflammation is thought to play a role, but that is about it. But why didn’t any of the treatments work for Sam? Why did Sam get brain damage so early on? To have your child die and then have so many unanswered questions is just added torture and heart break.


This is why I am fully invested into supporting the work and generating awareness of the NORSE Institute (New-Onset Refractory Status Epilepticus) who have created an international, multi-center investigation of NORES and FIRES. For those not aware FIRES refers to a subcategory of NORSE, the distinguishing characteristic of FIRES being fever between 2 weeks and 24 hours prior to the onset of refractory status epilepticus.

I am surprised I am still managing to survive in this world without Sam, and it is surviving. Every day feels like a battle and in the words taken from one of my favourite books, by Charlie Mackesy:


"Sometimes", said the horse. "Sometimes what" asked the boy. "Sometimes just getting up and carrying on is brave and magnificent".

All I wanted in the first few weeks was to go and join Sam. The thought of your precious five-year-old child going through death without you there to hold their hand, to protect them, comfort and care for them is indescribable torture. I can’t pin it onto one particular thing, or person that has truly saved me so far, though Sam’s dog Daisy and my wonderful friend Becky are probably two of the key things that did.


It was truly the holistic coming together of family, friends and community that did. Kindness, and compassion was shown to me in abundance, and so I thought it would be worthwhile just documenting some of these things that have helped me in the early months of Sam's death.


  • Concept and creation of Sam’s Superheroes,
  • A primal need to protect Sam’s name and legacy above anything else in my life,
  • Having access to an amazing counsellor; which I feel truly blessed to have,
  • Supportive and caring family and friends,
  • A caring and compassionate funeral director (Annette was just what I needed. They really are unsung heroes, and I never appreciated their work until Sam died),
  • Knowing that Sam has a world leading cross discipline NHS team at QMC Nottingham looking after him; from nurses, doctors, consultants both intensive care specialists and neurology specialists, physiotherapist (I never appreciated just what critical work they do in the intensive care setting), pallative care team, bereavement team, clinical pharmacist and other specialists. 
  • Support from the church at Mickleover Methodist full of compassion, community and wisdom,
  • A supportive school (Silverhill Primary School) and nursery (The Orange Tree, Mickleover) plus parents,
  • The support of local businesses and community groups from Our Mickleover, HUUB, Tesco, Nationwide, Derby’s Secret Santa, Timeless Balloons, Paw Print Vets, and numerous others,
  • Alongside compassion shown by individuals that we had never met before, and some of whom have now turned into friends.

They say that grief is just love with no place to go, and that I can truly attest to.

My heart is bursting with love for Sam and all that love has been poured into Sam’s Superheroes. It has been created out of my love for a very small boy and encompasses all the magical, amazing and beautiful qualities of Sam and what he loved about his life. My life going forwards is dedicated to Sam’s Superheroes, showing the world what a gorgeous, kind and gentle little superhero Sam really was, and spreading kindness and compassion in the world around us in his name.


Much love,


Sam's mummy