Hadley Clawson and the birth of Endurance Limits
On the 24th December 2007, I was at home with my wife and my two children relaxing in our lounge. Our youngest Hadley was only 20 months old at the time and life was how it is supposed to be as we enjoyed the excitement of the build-up to Father Christmas putting in his annual appearance. The tree was sparkling and the fire crackling away in the background. As I sit writing this, it’s strange to think that life was ever this way – the events of the next hour would change this forever.
Hadley stood up and walked across the lounge to collect a toy from my wife, but only made it halfway. He paused, then 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 I realized that something was horribly wrong.
The paramedics arrived within minutes and I raced through an explanation leading to our call for help. The paramedic hastily assessed the situation and with an almost imperceptible shake of the head and a nod in the direction of the door, so as not to alarm my distraught wife, told me everything I needed to know. Hadley was still contorted, violently convulsing, and slowly turning blue from the lack of oxygen.
Hadley made it to the hospital and was stabilized quickly. The next two weeks were a blur of seizures, suffering, and extreme emotion. Needless to say, Christmas and New Year were cancelled. Hadley continued to decline and one seizure became two, quickly escalating to twenty-five per day. By the 17th January, he was suffering from fifty seizures a day and getting worse. Frightened and exasperated I demanded action from the Hospital and contact was made with Dr Cheryl Hemmingway at the world-renowned Great Ormond Street Hospital for severely sick children in London. Within hours we were in another ambulance being transferred to their care.
I distinctly remember arriving outside with two complex and competing sets of emotions. The first was based around the knowledge that only the very worst cases are transferred here, the most complicated, serious and desperate cases – lives teetering on the edge. But somewhere in the recesses of my mind, I knew that Great Ormond Street is the home of miracles. Due to some of the finest minds in the world, Hadley was now at the place where lost causes become feel-good local news stories. Fear and hope living side by side in my mind, as the team wheeled my son through the doors and straight in for his first MRI. No time to waste.
The next few months were a spiral of suffering and more desperation. The teams worked around the clock trying to gain some control. Fifty seizes a day became one hundred… until in the end counts were noted for any full minute Hadley didn’t have a seizure. The strain on his body and mind was too much. No human being can take that sort of punishment for long. Every test that could be thought of had been done, every medication that existed had been tried in a desperate attempt to save him. Hadley was now slowly beginning to be poisoned by the sheer volume and variety of the medication.
I was being given an impossible choice to make. The drugs were so strong that withdrawing them quickly would push him into a withdrawal more severe than that from heroin and the resulting seizures could kill him, but not withdrawing them could also be fatal.
The world’s best minds recommended withdrawal, but we as his parents had to make the agonizing final decision. I insisted on signing knowing that if the decision was the wrong one my wife would never recover from authorizing it.
I was punch drunk. My wife had been living in hospitals with my son for three months, refusing to leave his side even for a minute. Numerous attempts to convince her to take a break met with the same reply “I will leave this hospital when my son does, and not before”. My days were filled commuting to London every day to be with them while simultaneously attempting to be both Mum and Dad to our three-year-old daughter. I was desperately bobbing along just under the surface, popping up for just enough breath to keep going whenever I could. My world had shrunk to cooking cleaning, caring, and commuting.
My birthday, 11th March, turned Great Ormond Street into a sea of flowers as I’d asked those close to me, instead of presents, to rather send Dr Cheryl Hemmingway bunches of flowers with a card reading “Hadley: find a way”. Late that evening, my wife and I had a meeting with the doctor. I paused at the door after seeing her face – I have delivered agony messages as a part of my job and recognized what was about to happen. I sat and listened, clutching my wife’s hand as Dr Hemmingway spoke with compassion and dignity that I still marvel about to this day.
We were told that the end was near unless something changed dramatically and that we needed to start to prepare for our son’s death. “It’s not possible to keep suffering like this, the human body just can’t take this level of punishment for long. Hadley has reached his Endurance Limits”.
I had been on the ropes for a while and this was the blow that would finally knock me down. I spent the day trying to comfort my wife and son. I have a big hole where the memory of the rest of the evening should be. It the strangest thing about trauma, it can manifest itself in remarkable ways. I must have been drowning in a sea of emotion as I was standing soaking wet in the dark as a cab driver swerved his car across the road to protect me from being run over by a bus. This caring cab driver came to my rescue and then put me on the right train home where I sat crying while some of the passengers whispered and gawked.
Arriving home and sitting in the middle of my kitchen floor in the darkness, the words “he has reached his Endurance Limits” went around and around in my head. This was my lowest ebb. Needing to find a way to survive, I decided right there and then that I would set about fundraising for those that needed help. My cause may be lost, but no one should ever have to go through this and those that do should be supported. Perhaps with the right attitude and application, I could raise so much money that another family might dodge the bullet? In all honesty, the decision was as much about giving me something to fight for, something to get up and go on for, because at that exact moment I didn’t fancy that very much.
Over the following weeks, the head of neurology, Professor Helen Cross, together with her dedicated team, found a way to save Hadley. But the damage had been done.
Hadley came home about six weeks later… mentally impaired and severely disabled. My son is now unable to walk, talk, or feed himself. His disability is all-encompassing and he still suffers from seizures, though much less regularly.
As the dust settled I spoke with my friend about my plan to turn my tragedy into something positive.
His response was simple. “So, how are WE going to do it then?”
We met and discussed what my idea could look like and how much we thought we could raise, we wanted to make a real difference. We settled on trying to raise the cost of the care Hadley had received. Our target was set at £250,000, an amount demanding some epic action.
We googled events and stumbled upon a self-sufficient 255km long footrace through the heart of the Jungle in Brazil. The hardest Ultra Marathon in the most inhospitable environment on the planet. We agreed that people would likely respect that level of effort and be more willing to donate so we signed up. As I typed ‘ENDURANCE LIMITS’ as our team name, our socially responsible adventure racing team was born.
We raced in the jungles of Brazil, the Andes Mountains in Peru, we ran clean across a country. An attempt to row across the Pacific resulted in us eventually being recovered from a life raft bobbing around in that icy ocean. From broken arms and getting lost in the jungle, attacked by swarms of hornets and going into anaphylactic shock, to falling off mountains and being unconscious in the Peru race only to get up and finish… we’ve had a crazy ride. But we had finally hit our target. Thanks to our corporate sponsors and other donors, we had repaid my debt to the people that saved my son’s life and the money went further to help save other children’s lives.
That need leads me to now.
My son is now 14 years old and lives at St Elizabeth’s, a centre for children and adults with Epilepsy and other profound disabilities. The centre houses some of the most vulnerable children who need a great deal of care and support. I have become aware of their desperate need to upgrade their specialist Health Centre, something Hadley so desperately relies on for his health, seizure control and safety.
£100,000 and that Health Centre can become a reality. Those children and adults will be able to access all the help they need, and their families can be assured that they are getting the best specialist care. So many of the residents, like Hadley, have such complex health needs – some having incredibly rare forms of epilepsy or syndromes only a few people in the world have – requiring constant medical care and support. Being able to provide that on site, 24/7 puts families’ minds, like mine, at ease.
The Endurance Limits Team has set our goal to cross it, raising funds towards the Health Centre…
AND breaking a world record!
As is always the case we can’t possibly achieve this on our own….
ARE YOU WILLING TO BE PART OF OUR TEAM?
WHO’S ON BOARD?
We’re counting on you.
To reach our goal, we need YOU ONBOARD!
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