OUR PERFECT LIFE

 

Three years ago today at 8pm, was when my perfect, yet ordinary family life was blown apart and changed forever in the most tragic of ways. That morning when my son Sam and I woke up we were totally oblivious to how our day would unfold and what catastrophic, heart-breaking and excruciating painful times lay ahead for us.
 

FIRES THE SYNDROME OF NIGHTMARES

It was just two weeks after my son’s 5th birthday when we were suddenly catapulted head-first into the fight of all fights to save his life from the sudden onset of rare catastrophic syndrome called Febrile Infection Related Epilepsy Syndrome (FIRES). It is a syndrome so horrific it wouldn’t even enter your worst nightmare. Even more tragically it presents suddenly and explosively in previously healthy children, who have never had seizures before causing significant neurological disability, chronic epilepsy and high rates of mortality.

The syndrome is so rare and elusive that it is not yet understood what causes it, although inflammation in the brain appears to play a part, and there are no known effective treatments.

 

Between now and 8 May I will be sharing a daily personal blog detailing Sam’s courageous fight with FIRES to raise awareness of this horrific syndrome, and show why UK research, currently being carried out by the most inspirational people, is so badly needed.

For today, I will share a glimpse of Sam's courageous fight with FIRES. 

 

THE START OF SAM'S FIGHT

Sam was a beautiful, kind, loving, caring and joyful little boy who loved nothing better than cuddling up to his dog Daisy and exploring the great outdoors. Over the weekend of the 20 March, Sam had what medical professionals thought was a virus. He had a high and difficult to control temperature, an intermittent strange red rash on his cheeks and exceptionally red ears. On the Monday we thought Sam was getting better, but he seemed to relapse around tea-time and worried we took him to the Walk in Centre in Derby. Sam was examined by a nurse practitioner but nothing out of the ordinary was found. Shortly after we returned home Sam was sat on the kitchen table waiting for his bedtime cup of water, when he started blowing bubbles and drooling and collapsed into my arms. He was having his first ever seizure. With Sam in my arms I ran out of my house screaming for help whilst I was calling an ambulance. I ran to my neighbours house where we watched helplessly as Sam
proceeded to have clusters of seizures, without regaining consciousness for 35 minutes. I was terrified I was going to lose him and have never felt a fear like it before in my life.

He was blue lighted to The Royal Derby Hospital, and whilst Sam seizures had initially stopped, call it mother’s instinct, it was clear something was catastrophically wrong as he was not talking, not displaying any emotion, and was just looking vacant. When Sam arrived at The Royal Derby hospital he was badly let down from a catalogue of errors and poor care. However, this is something I do not wish to focus on. Sam never regained baseline consciousness from the moment of his first seizure and within the space of eight hours at Derby he was placed into an induced coma after going into respiratory arrest due to non-stop uncontrollable seizures. He was then immediately transferred to a neurology specialist hospital, Queens Medical Centre Nottingham, to receive the expert care he so badly needed in their fantastic paediatric critical care unit (PCCU).

 

THE FIGHT OF OUR LIVES

Our neurology team quickly informed us that Sam was presenting with the horrific syndrome called FIRES and it was exceptionally rare. We were gently told he would not come out of this neurologically unscathed. We learned that continuous seizures kill brain neurons and therefore cause brain damage, which we were previously oblivious too. Within one week Sam had brain swelling and brain damage which just continued to evolve.

Every single minute of every single day was a roller coaster. The fear, panic, helplessness and anxiety I felt was off the scale. We were fighting for my son’s life day in and day out. I was continually oscillating between hope and despair. I was utterly petrified every single minute of every single day Sam was going to die, but I was trying desperately to cling onto hope and work with the medical teams to find an effective treatment.

Trying to stop Sam’s seizures whilst keeping him alive was hugely complex, he had multiple medications, treatments, and complications.

Sam continued to have uncontrollable seizures during his seven weeks in critical care. Despite all the treatments, despite the world leading care, despite the non-stop fight of my son and everyone involved he ended up with catastrophic, irreversible brain damage.

 

FACING THE IMPOSSIBLE

 Myself and Sam’s dad, remained by Sam's bedside fighting with him until his medical team said the heart-stopping words no parent should ever have to hear. They felt it was in Sam’s best interests for his life support to be withdrawn. The catastrophic damage to his brain meant that Sam would never have any meaningful recovery.

Words cannot describe how we felt. As devoted and loving parents we could not allow our son to suffer any more than he was, and wanting to do what was right for him we supported their decision. We took the lifetime of pain to prevent any more suffering to our son.

When Sam took his last breath in our arms surrounded by love, our perfect life catastrophically shattered into a million pieces all around us as we entered a world of overwhelming grief, emptiness, numbness, desperation, and heart wrenching pain. We would never see our beautiful son again; or hear his joyful voice, his laugh and his giggles; or hear him say the words ‘mummy’ and ‘daddy’; or feel his kisses and hugs; or see him write a card with the words ‘I love you’ in it just because…well just because our precious boy wanted to.

With Love,

Sam's mummy