​The charity kept us together at one of the worst times possible, the significance of that cannot be underestimated

It's been a year since we came across The Sick Children's Trust's Acorn House, nevertheless we are just as thankful to them, if not more so, than the day we were welcomed into their 'Home from Home'.

We've just celebrated Henley's first birthday, it was an amazing family get-together with lots of smiles and laughter. We were also celebrating raising over £2000 for The Sick Children's Trust after a group of us got together to do the 5k Electric Run. And now it's all over, and I'm looking back - I am overcome with emotion. We've come really far since Henley was ill, but managed to pull through and stay strong as a family.

So, what led us to The Sick Children's Trust?

When my beautiful boy came into the world in May 2014 we were filled with happiness and unconditional love but soon after he was born it was clear our little boy was poorly. The doctors whisked him off to the neonatal unit to carry out some tests as things didn't seem right and that's when it happened. My baby started having seizures. 

Can you imagine what it's like to see your bundle of joy physically struggling for life only a few hours into it? It was heart-breaking. The doctors did some scans on Henley to check what was wrong and realised he had a bleed on the brain. We saw the panic unravel around us and neither of us knew what to do. Calls were being made to hospitals all over Essex to see whether treatment was available there, but there wasn't the specialist care he needed.

The situation was out of control, or out of our control at the very least. We didn't know what to do. Finally, after a long, agonising wait Addenbrooke's Hospital immediately requested he was transferred up to Cambridge.

Not only was this traumatic enough, the doctors weren't able to let me accompany Henley to Cambridge as I had high blood pressure, so my baby travelled up there without us while my Mum and Dan tried to comfort me.

There was no comforting though. We were all so worried. I didn't want to be over 40 miles away from my new-born son, and I wouldn't be. Finally we left the hospital and made our way up to Addenbrooke's, we was on a mission to be by our son's side.

Henley had to undergo major surgery to his brain and before we could even get to Addenbrooke’s, the surgeons made the decision that this needed to be done as soon as possible. There was so much uncertainty which made everything worse. We believe the procedure have never been done on a baby so small, so the doctors couldn't tell us anything. We didn't know how long he'd be in there for or what the outcome would be.

When we arrived at Addenbrooke’s Henley’s operation had already been carried out and he was now in intensive care, we sat by his bedside in utter shock and upset, praying our baby boy would pull through this. We were then told about The Sick Children's Trust. I'll be honest, I had never heard of the charity before and you tend not to unless you're in that situation. But Acorn House was a Godsend.

There'd be nights where I'd lie awake, thinking about Henley, worry about what he was going through, what would happen, but it wasn't an issue. I wasn't an hour and a half away from him, I was across the road. Two minutes away. I had a direct line to the ward too which made me feel unbelievably secure.

We stayed at the house for 12 nights. We would often pop over to the Intensive Care Unit to see Henley in the evening, though he was in a coma most of the time, we were just waiting for some news.

There was a time his condition took a turn for the worse, doctors telling us we were to take each hour as it comes. This is when the house shone for us. I didn't have to cope on my own. I had my partner Dan with me throughout, but on this day Joy, the House Manager, allowed my Mum to stay with us in the house. The charity kept us together at one of the worst times possible, the significance of that cannot be underestimated.

This house wasn't a hotel, it became our home. We could come and go as we pleased, cook our food and most importantly be around people in a similar situation to us. We made friends there, in fact we met a couple from our very own town who we are still see in our home town from time to time, and we knew it didn't matter if one day you didn't want to talk to anyone because everyone understood there was a very important reason as to why you were there.

When the day eventually came, the day we'd be waiting for, after a long wait, I remember it so clearly. We walked onto PICU and everyone was just smiling at us. Our little boy had gone from being on the edge of life to having all his tubes taken out, was breathing on his own, and making miraculous progress. The worst was over. He was going to be OK.

We never knew what kind of recovery Henley would make or if there would be an permanent damage, but a year later, Henley is doing incredibly well, and has made excellent recovery, he is doing what every one year old is expected to be doing. We will be going back to Cambridge in October to see Henley’s Surgeon, we will have further scans to see how his skull is recovering and part of his skull was removed to carry out his operation.

When we do go back, we hope to pop into Acorn again. It's amazing how the house had such a big impact on us during those critical days. We can't thank the charity enough.

We'll also continue to fundraise for The Sick Children's Trust as the 'Homes from Homes' they run are so important and we want to make a difference to other families going through the same experience. We can't thank them enough for everything they have done for us.