Not so much a blog post, as a call to arms

I need your help...

Honest, I do...

For most of the last 18months I've been pounding the streets and hills of the UK, writing to magazines and papers to try and raise as much awareness as I can about congenital heart defects and the real impact they can have.

I say real, because I don't tend to focus on one aspect, awareness should be about the diversity our community has. To focus on any one element gives an unbalanced portrayal, either too positive for some or too negative for others.

But I have one story, mine... And I can only talk in abstract about the range of ways that congenital heart disease affects those born with it, their parents and families and loved ones.

Taking our stories out and getting them into the public domain is never easy, and need a hook... something to sell them to newspapers and more magazines.

So I'm prepared to do the hook, the coast-2-coast walk is 190miles from St Bee's Head to Robin Hood's Bay, walking through the Lake District, the Pennines, the Yorkshire Dales and North York Moors. I'll do in 2 weeks...

As you'll see there's a bit of up and down as well...

During those 2 weeks c190 children will be born with a congenital heart defect in the UK. I may never get to meet any of them, but I have met many, and many who I know read this blog and its to them this is a call to arms.

I'll do the hard work, the 190 miles... and will provide a framework - half a press release, with what I'm doing and why and then the rest of the space is for your stories. You have to then send them to your local papers, radio stations and whoever else you think will raise awareness. Each of the miles will be nominated for someone, so they own a little bit of my boot leather and they can fix their awareness raising on something concrete.

So that's the plan, I've 5 months of hard training to get myself fit enough to take this challenge on, and its a challenge for most people who do it.

Just think about 200 stories hitting the press in 2 weeks, each spelling out what congenital heart disease means to us...

So whose going to rally to the flag?

TTFN

Paul

Comments

Post a Comment

Popular posts from this blog

Something a little bit political...

Well the legs still don't want to run, walk and climb is fine, run makes them feel a bit leary ... Probably the two most contentious words in the congenital heart world (UK branch) are "safe and sustainable", a quick trawl of the support websites or facebook will show many a group being set up to save a hospital or a ward. I won't be joining any of them. Not because I don't care, but because I care too much. The origins of Safe and Sustainable go back to the Bristol Hospital Enquiry, and quite simply this is designed to ensure that the surgery that heart kids get is the the most appropriate, done by well trained and supported surgeons who are used to doing the operations and are in a surgical setting which are designed around the needs of the child going through the surgery and their family. Is that too much to ask? I don't think so. I want every heart kid to get the best surgery available to them, I want their parents to be given the best advice, support...
Read more

12% of a plan…

  It’s been a month.     A month since the new heart valve was inserted… the chaffing has died down, I’ve been sensible and built my walking up, restarted my apple fitness plus bits and bobs (boy has it been a long time since I bent like that, or cycled/spun like that) and I’ve been for two runs – a gentle 3k which worked as a prelude to my return to my local parkrun… I finished, my tally went up 1, and I remembered just how tough it is to run the first mile on so soft, dry sand… In hindsight I would’ve been better to walk the first third and conserve my energy (and pool of fitness) to the prom and the grass thirds…   Relive 'Return to Parkrun!' Yes, it does look the first bit is out to sea…  Monday was a random day off work to get out and do something, so with a bit of head scratch and some nifty plotting on the OS Mapping app I wandered along the canal, and then down the Transpennine Trail & “loop line”… Almost pancake flat, I know...
Read more

It’s a kind of magic (the science kind)…

  Well, operation done – I have a funky new valve and a bit of a sore groin.     I was in hospital for 28, sleepless, hot, hours and unconscious for about 4 of them.     While the insertion points for the three catheters I had in me in at the same time heal it’s a case of taking it easy, let my body get over the various manipulations (sore throat, the impact of the still there frozen shoulder) and the simple lack of sleep from stress and some noisy neighbours on the day ward I was on.  There’s really not a lot else to say… I went in, did the usual pre-op checks, had a chat with the interventionist, had a chat with the anaesthetist, signed the all-important consent forms (kids – that’s when you know you’re an adult; parents, that’s when you know your kid is in charge), was wheeled across to a hybrid cath lab… laid down, bit of banter with the team and the next thing I knew I was waking up, sore and not actually knowing whether the funky valve had fitted me…...
Read more