...and 16 years, 4 months and 20 brain surgeries later, I still have the headache.  I hadn't even heard of hydrocephalus until I was diagnosed with it, aged 26, out of the blue.  It wasn't until I was transferred to the National Hospital For Neurology & Neurosurgery, Queen Square in 2004 that I started to gain an awful lot of information about the condition from my amazing neurosurgeon, Mr Laurence Watkins, who answered my many, many, many, many questions with a great deal of patience and detail.  The National is also where I first met Lewis Thorne; he was Mr Watkins' registrar at the time and performed a few surgeries on me.


One day in April 2008, when my shunt was overdraining badly and I was awaiting a hospital bed at The National for what felt like surgery number gazillion, I was online looking at hydrocephalus-related posts and stumbled across a video of a lady standing in a bare, sparse room in an orphanage, full of metal cots.  The cots were occupied with children dying of untreated hydrocephalus. This was the Go Vap Orphanage in Vietnam and all the children on that ward were terminal.  The lady in the video stated that sometimes they get the odd shunt donated from hospitals....I made a mental note to ask Mr Watkins if there might be any spare ones to send. 


And that was it.  I couldn't get what I had seen out of my head and couldn't believe my good fortune to have been born with hydrocephalus in the UK and not in Uganda, or Kenya, or the Congo...  I was in hospital having brain surgery too frequently over the next few years to really do anything about it (surgery once every 7 months on average for over 10 years) but I knew that as soon as I had a bit of breathing space I wanted to see if I could get some regular donations of shunts together to send out these areas.  At the very end of 2013 I had a bit of breathing space, collated all the information I'd been gathering since I watched that first video, and started emailing.  

So I had a meeting with this guy...

And even though it's downright horrible at times, you can't help but feel very, very lucky when you've spent months looking at photos of children who do not have the reassurance of help being at hand.

here, 

..And of course here!

...and this....

Well it all started with me (jordan) getting a headache one evening...


Shunt kits started piling up at home (cat loved the wrapping).

The emailing paid off; I got some donated shunt parts from a few hospitals and lots of enthusiasm from interested clinics/surgeons. I also got lots of rather medical and technical questions.  That's when I realised I needed someone to help me; although everyone had been all for it,  I couldn't do this alone. 

...and this....

here, 

So now we were three and had sent medical equipment, shunts and neurosurgical items to....

There was an awful lot of this...

We sent our first shunts to Vietnam (this is the lady from the video I'd watched online years earlier)

​​Action For Hydrocephalus

​​Registered Charity Number 1169606

The problem is vast and resources are scarce.  But if this journey so far has taught me one thing, it is this; every shunt, every surgical item, every family who uses the diagnostic tools to check for hydrocephalus symptoms as soon as their child is born is one shunt, one item and one family closer to making real progress.  Working with like-minded people who hold the same desire as you to put an end to the suffering these children can go through means that it can be achieved.  

...and this....

here, 

​Then we were joined by this guy...