Alex’s Fundraising Story


So let me say something right from the start. I do not have OI. I have no family members who have OI. I had only vaguely heard of OI up until around 11 years ago…but the plight of a dear friend moved me immensely, and this story is about how…and what, I decided to do about it. I hope that, maybe, it will encourage others, without a direct connection to this debilitating disease, to do something about it, too

One fine evening, I was celebrating with my wife, my dear friend and business partner, along with his wife too, at a lovely restaurant – an evening that we had all been looking forward to. We were in business together, and the future was looking bright. We were celebrating friendship, along with the fact that we had taken the leap and decided to ‘risk it all’ in the name of creating something special.  It was an evening away from their young son, leaving him with a babysitter, and experiencing that joy of ‘freedom’ that new parents do when they are able to.

They had shared that earlier in the day their son had fallen and hurt his leg. Although uncomfortable, he was resting and the parents continued to check for any updates from the babysitter. All was fine. We finished our meal and headed to our respective homes…then ‘the’ phone call came. Their son was in discomfort when they got home, so they took him to hospital – it looked like he had broken his leg.

Stop. Everything.

The shock, disappointment and worry all came at once. What followed is their story to tell…not mine….but what we became aware of within a few short hours is that not only had their son broken his leg….that the first port of call for the medical authorities, having attended to the broken limb, was to firstly assume that the primary cause of this broken leg, was one of abuse. Both parents were separated from one another in adjacent interview rooms – and these dear, kind, doting people were grilled about their intentions and parenting approach to their son. The distress was intense, the injustice affronting, and moreover, they were prevented from caring directly for their son.

From my distant perch, seeing what was happening, I was outraged, saddened, frightened for them, and bemused that how, in this 21st century, in what purports to be a civilised country, that this was possible.  I also felt helpless…what was there to do?

Once OI had been diagnosed…the support for their son was incredible, and the parents were absolved of any wrong-doing…but just imagine the mental torture and heartache that those two people must have endured, and how lonely the child must have felt…unable to express this at his young age.

Many of you reading this from within the ‘OI world’ may have experienced this first hand…or at least have heard of others doing so. The vast majority of us ‘outsiders’, many of whom have almost literally zero knowledge of this awful condition, are clueless. Not only do we not understand the true implications of living with OI (read some of the amazing stories on the BBS website of you want to get an idea), we certainly have no idea how to help those of our loved ones and friends who provide so much amazing support for their family members suffering with the condition.

What you can do is raise awareness and money to help the experts at the BBS charity who do so much to support. In the scheme of things, this little-known charity deserves more support. Make your charitable donations to them a priority, and any fundraising you do, direct it their way.

So, that’s what I did. (this is not about me…but I hope it should give you some inspiration).

The Three Peaks Challenge, anyone? I hauled my 55-year-old body up and down the three largest ‘mountains’ in Wales, Scotland and England, nearly got ‘blown off’ Snowden, and finished off my knees in the process. (ah yes, and raised a ton of cash as well).

Then, last year, I hauled my almost 60-year-old body (and 2 new knees) along the roads of France, and travelled from the north coast to the south coast over a period of 12 days (1,100kms), and raised several more tons of cash.

The joy of feeling the incredible support and encouragement of those digging deep to sponsor me was humbling…the camaraderie of doing both of these events with people that I hold close to my heart was deeply fulfilling, and the satisfaction of completing (what is for most) such a physical challenge was liberating and exhausting in equal measure.

That’s it…in the context of offering support to this cause, a mere drop in the ocean….but it motivated me to want to help…and do ‘my little bit’.

What can you do, today, to make a difference?

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