On the 6th of November 2018, my wife and I welcomed our little girl Elsie into the world. 5 minutes after she arrived, the midwife told me that "things were not looking good and we should expect the worst". I'm still not sure how someone is supposed to respond when given that information.  I was told that it was likely that Elsie had a chromosomal condition that meant she would not live past 18 months. Elsie was born in Malaysia in a private hospital and in the week immediately following her birth we had just about every test under the sun to try and work out what was going on. It's hard enough to be told that your child might be diagnosed with a life-limiting condition without also having to ask how much each of the different tests would cost? Could we afford it? What would happen if we couldn't? How are we in this situation? why us? why her? 5 months after Elsie was born we left Malaysia, our jobs, home, and friends and returned to the UK. Not only could we not afford Elsie's ongoing care, but no medical insurance company would cover us as Elsie had an, as yet, undiagnosed pre-existing condition. We are so lucky to have the NHS in this country and the events of this year have only highlighted how important it is and we should do everything we can to keep it. Over the next 18 months, we spent time in the Heath Hospital, Cardiff, The High dependency unit in Frimley Park, and the Intensive care unit in the Evelina, London. As a parent, these extended stays are really scary times. At any moment you are waiting for someone to come in and give you some bad news, you sit there for hours watching your child be prodded and poked, having test after test. You hold her hand as tubes are inserted, bloods taken, and medicines administered all with the constant sound of monitors beeping in the background displaying readings you don't understand. You feel useless, helpless, and scared. 

Thankfully this is where ROnald McDonald House Charitiy (RMHC) comes in. At the Heath, they provided us with a room directly across the road from where Elsie was staying. In total, we were there a month having only come in for an overnight sleep study. In the Evelina we stayed in the accommodation just a few minutes walk from the ICU while she was recovering from her surgery The rooms were clean, the beds comfortable, the showers hot, and the staff friendly. Having a calm, quiet,  and private place to stay just minutes from where your child is being cared for is so important. Without that, the experiences would have been that much harder. I had never heard of RMHC before we visited the Heath but I am so glad they were there for me and my family when we needed them. 

Well done for getting this far. I managed to get this marathon place in January and must have written this piece at least 10 times since then. I'm sorry it's so long and not very well written but it is still very hard to think/write about what has happened. Nothing I write here will ever come close to really describing how hard those hospital stays were. Having said that, I know from reading other people's experiences how lucky we are to still have Elsie with us, so while it has not been easy there is so much to be thankful for. Elsie is a wonderful little girl and we are immensely proud of her. The way she deals with all the stuff she has to put up with is amazing and a constant inspiration for me.

I appreciate that this has been a difficult year so asking for donations feels insensitive, but if you feel you could spare something It would mean a lot to me, and families like mine, if you could help support this amazing charity.