My son Hadley has Epilepsy. On December 24th 2007 he was walking across my lounge to collect a toy from his mum when he collapsed, contorted in a massive seizure. In retrospect it wasn’t the first sign of the storm that was brewing but it was the moment that I realised something was horribly wrong. The paramedics arrived inside three minutes and I greeted a familiar face at the door ushering him inside as I explained the events of the minutes that had recently elapsed.
I’d slipped into work mode, concentrating on clarity of thought and action. My wife was distraught, but as usual I’d do my panicking and worrying when the problem in hand was dealt with. The Paramedic hastily assessed the situation and then glanced up at me, and with an almost imperceptible shake of the head and nod in the direction of the door (so as not to alarm my wife) told me everything I needed to know. Ill spare you the details of what followed in the ambulance and Hospital because if you are reading this you have probably been there a thousand times.
The weeks that followed saw a dramatic decline in Hadley’s condition. On 17th January 2007 he was admitted to our local hospital suffering from twenty fits plus per day. The slide was exacerbated by the addition of Sodium Valporate and then Clobazam. The Seizures changed, and multiplied again, and my concern rapidly turned to desperation. Within two weeks I arrived at the ward and saw no improvement. I challenged the Dr, demanding either an answer to exactly what was wrong or contact with someone that would know.
I’m not a patient man at the best of times. You don’t have to be polite to me, I require no sugar coating of facts and I’m not impressed by titles or reputations. What I do demand is success or the name of someone that can provide it. It was at that exact moment, distinctly unimpressed by my abrasive affront to his credentials and no nonsense approach, that the Dr blurted out “this is not an exact science and NO, I can’t tell you exactly what is wrong with your son at this very second. Outside of Great Ormond Street there is probably no one that could…..”
I called GOSH from my mobile in front of him. Spoke to Dr Cheryl Hemmingway, explained that my local Paediatrician had informed me that my son required an immediate transfer and then placed the phone in his hand and walked off, ensuring that I left him with a look that spoke volumes. Two hours later Hadley arrived at Great Ormond Street and started what was to become a three month stay. His condition continued to deteriorate and he slowly slipped away from us, until he was unable to walk, or talk.
On March 9th Dr Cheryl Hemmingway took my wife and I to a comfortable room and broke the news that his condition may never improve. This was done with a dignity and a genuine feeling that I will always be grateful for and was accompanied by the promise that she would never give up trying. I vividly remember leaving GOSH and sitting on the train home crying openly as passengers around me gawked and whispered. That night, sitting alone in the dark in the middle of my Kitchen floor staring at an unopened can of lager, I hit my lowest ebb.
If I’d opened that can, another 20 would have followed. Instead I text everyone I know explaining that hope was fading and asking that instead of birthday presents on 11th, I wanted flowers sent to Hemmingway at GOSH and all of the cards to simply read “find a way”. You can’t upgrade when your already at the best hospital in the world, all you can do is attempt to focus the assembled talent in the direction you want. Forty eight hours later twenty six bouquets had arrived and hospital resembled a florists wedding. The next day Helen Cross came down to meet “the little boy all the fuss was about” and after a case conference changed the medical plan introducing Ethosuximide instead of Keppra. His condition improved and the Ketogenic diet was mentioned as a possible long term treatment.
After a serious but unsuccessful attempt to bribe the dietician with two years salary (which I intended to fund by selling my home) we were given the news that based on clinical need Hadley was bypassing the waiting list and would start the diet immediately. I wonder to this day how much of this decision was simply to appease me and stop me from kidnapping their staff, which I had joked was the only option left seeing as they simply refused to worship the god of money…..
Hadley is Home. His development is delayed although not drastically at this point and I have taken to attempting to manipulate, bribe, threaten or cajole a new range of unsuspecting health and social workers. Speech therapists, Physiotherapists, even his soon to be nursery. No one is safe! His condition continues to improve and I continue to desperately seek out the next 1%. He is my son, and if it’s out there, ill turn over every rock until I find it. I have a limited skill set, but what I lack in intellect I attempt to make up in cunning or just straight determination.
I have also busied myself with attempting to right the wrongs I have seen in the system. I also feel a deep sense of responsibility that Hadley may have taken the place of another child in his rushed placement on the Ketogenic diet. This troubles me greatly. No family should ever have to endure the agony of waiting and hoping whilst they watch their child suffer. I have undertaken to raise funds to reduce the waiting list and as I write this my Jungle Marathon fund in aid of Helen cross’s Ketogenic projects sits at just over six thousand pounds with a further six thousand expected from various events and collections.
So that is our story through my eyes. I love my family with an unrivalled passion. The last fifteen months and the suffering they have had to endure cuts deep into my very being. My inability to affect the sequence of events and misfortune that have beset us has taken a great toll on me. At the very time my loved ones cried out for a miracle and looked to me to provide answers I was unable too. Epilepsy has destroyed my vision of the life I had hoped and dreamed of for my son. For the time being at least, it has taken from my son the prospect of sports days, swimming, schooling, academic achievement, normality and success and replaced it with suffering, limitation and dependence.
On a personal level I have been entirely unable to come to terms with these prospects and have coped by focusing on providing the few things I can - financial stability and love. I am also determined that good shall come from these dark days, if not for us then for others like us. The money I raise will be used for the greater good of people that I may never meet, but somewhere amongst the despair this crumb of comfort resides. With that crumb comes hope, for I am a great believer in karma. I believe that some where there is a God looking down on me and that he sees my effort. He sees the pain I endure and for every good I do he will visit that back on the people I love. Ergo, if I’m unstinting in my work and selfless in my actions my son will continue to improve.
Epilepsy may be winning on points at the moment, and it may have knocked me down in the first round but this fight is going to go the distance at least. Don’t bet against me finding a knock out punch from somewhere because I am a stubborn man, and I have the good people of Matthews Friends in my corner.
Darren Clawson – Dad to Hadley.