So back in October I listened to Chris Evans waffle on about how easy running was and in a moment of madness entered the London Marathon ballot (wait out on that one). I probably should have started training at that point but it was pretty much Christmas by then so I ate and drank instead 🤷🏻‍♀️

Flash forward and the twins are 5 months old now and I'm due back in my uniform in a matter of weeks. I will not fit in it. Figured I better get my backside in gear with a real target, the GMR half marathon. Nothing like a bit of pressure to burn off the Christmas calories...

It also gives me a great opportunity to try and raise awareness (and hopefully some pennies) for a charity close to my heart, UKIST.

On 13 November 2018, Kyle and I welcomed our third son, Milo into the world. The pregnancy was complicated, the delivery hadn't gone to plan, but he'd arrived and he was healthy and absolutely perfect. He was such an easy baby, he was always laughing, really chilled out and hardly ever cried - an absolute dream after the other 2 😉

At around 6 months though we started to notice some minor abnormalities. He still couldn't sit up, he showed no interest in food and he didn't ever seem to move his right arm. Months went by as we waited on a paediatrics referral and by 9 months he'd started sitting up and I'd started convincing myself that I was being paranoid.

In August though everything changed. All of a sudden he began making some really strange movements. At first they were infrequent and they happened so quickly that it was easy to miss them. But it got worse. They started to last longer and happen more frequently. I took him to the GP who said it was nothing but I just couldn't shake the feeling that something was wrong. I did the thing that you're not supposed to do in that situation and I went online. I stumbled across the UKIST page and everything fit. I followed their advice, film everything and go to A&E. 

On 13 Aug 2019 Milo was diagnosed as suffering from West Syndrome (Infantile Spasms) a rare epilepsy diaorder as a result of a stroke. 

I can't begin to describe the helplessness that a diagnosis like that brings. I wouldn't wish it on anyone. We were told that Milo might never walk or talk. He was given medication that stopped him sleeping; that took away all aspects of his personality and with no idea whether things would ever improve. It was in those early days that we went back to UKIST. 

The support they offered and the advice and guidance on everything from sleep to medications was invaluable. They were a real shoulder to cry on during our living nightmare and we are completely indebted to them.

In the years since then they have helped countless other families in various ways. An absolutely amazing charity that I'd love to give something back to.

Thanks for reading and in case you're wondering, Milo is now walking and talking 👊

The UK Infantile Spasms Trust (UKIST) provides a vital network of support to families with children affected by the rare seizure disorder Infantile Spasms, also known as West syndrome. This is a serious seizure disorder, and unless it’s recognised and treated early, the prognosis for affected children can be very poor. The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little-known condition. By supporting UKIST, you will make a real difference.