This story first appeared in the Information Point newsletter Our World in 2012 when Mel Spring, the Communications and Education Officer at the Myotubular Trust, told us about her work and what led her to take up the role.
3rd November 2008 – my first day. Nervous doesn’t even come close to how I felt despite the fact that myotubular myopathy was not new to me. My background was 17 years in banking followed by a few years in a secondary school – this was very, very different.
My journey with myotubular myopathy began on 21 July 2003 when Tom Lennox came in to the world; the first son of my dearest friends Anne and Andrew. On the sidelines, watching the tests and diagnosis slowly unfold, watching those I hold so dear hoping and loving in a way which I’d never before witnessed.
That particular journey sadly came to a close on 29 May 2007 – a day which I shall never forget and a day which I remember oh so vividly every time we hear the heartbreaking news that another life has been lost to this cruel and devastating condition.
Sat at a kitchen table with a mountain of documents about myotubular and centronuclear myopathy surrounding me, as I started to read, it hit me just how much Anne and Wendy had achieved in just 2 years; each working in their own homes, many miles apart and both managing their own personal challenges. It was almost impossible to comprehend that they could have done this given their circumstances. I was, and am, still in total admiration of them both and consider myself very lucky to work with, and alongside, such inspirational ladies.
Within days I was ready to send an email to introduce myself and explain my new role. The welcome from family supporters was so warm you could have toasted marshmallows on it and the warmth and the number of people with whom I have the privilege to be in contact with continues to grow. I now have so many new friends.
To say that my role is diverse is something of an understatement. In any one day I can be posting wristbands, doing book keeping, climbing in the loft to stock take t-shirts, supporting a fundraiser with an event and sending information to a family which has just received a diagnosis. My home, where I work, is full of t-shirts, collection boxes, Christmas cards and files but whilst I sometimes curse when I stub my toes yet again on the boxes at the bottom of the stairs, I count my blessings daily.
I count my blessings because I am in contact, almost daily, with people who inspire me beyond words. This is the most humbling of jobs; children collecting their coppers to donate in memory of a lost friend; journeys from so far away to support an event; excruciating personal challenges; people forsaking gifts when celebrating very special personal occasions; and so heartbreaking – the news of the loss of a warrior.
It’s fair to say that so often the tears flow for the loss of somebody you’ve grown to know so well; there are so few affected by the condition that those who lose their fight are more than just a name on an email – they are people who we have grown very close to, know so much about and care for. I can spend hours trying to find the words to say just how truly sorry I am each time such sad news comes our way – it will never get easier and I guess the day it does is the day when I resign.
There are days when you are so emotionally drained by tragic news or by attending the fundraising events that remind us time after time why we have come together, that it would be easier to walk away than to carry on. But, the strength and the love that I have witnessed in each and every family and adult living with the condition that I have had the joy to know, and sometimes meet, provide such motivation and strength and for that I thank you all. Whatever your personal journeys, you all amaze me – I thank you all for allowing me to share some part of your journey.