Chloe was born with a condition called microcephaly, which means her head was a lot smaller than expected and her brain did not develop as it should. Because of her condition, Chloe has global developmental delay and at four years old, she was also diagnosed with epilepsy having suffered from regular seizures. These problems combined meant she spent quite a bit of time in Great Ormond Street Hospital until she was six years old. From then, our local hospital and community paediatrician took on overseeing and implementing her care.
Although Chloe is largely non-verbal and has serious health conditions, she’s always been a happy child who, in spite of the hardships, loves her family and life. So when at 15 years old she stopped eating and came down with a fever, it became very clear to me that something was seriously wrong. I took her to our local doctor who said she had a viral infection and needed a course of antibiotics. Rather than improve, Chloe seemed to get worse. Over the days that followed she was losing even more weight and refusing to eat. Five days later, I took her to Basildon University Hospital as I was really worried. The doctor reassured me that antibiotics take time to work and we needed to wait a few more days for the infection to clear up.
That was on the Friday before Christmas in 2015. By Sunday 20 December things were much worse. At 2am in the morning, my partner Trevor and I woke up to find Chloe on the floor in our bedroom. She was struggling to breathe as Trevor picked her up and I woke up her brother, Ryan, before we all rushed back to the hospital in a panic.
When we arrived Chloe was admitted to the paediatric intensive care unit (PICU). We waited, devastated and terrified, with time seeming to pass by so slowly. Hours later, a doctor came to explain to us Chloe had severe pneumonia and needed to be ventilated. As he went back into PICU, I saw Chloe lying there through the open door. She wasn’t moving and a doctor was performing compressions on her chest. I began to scream and collapsed into Trevor’s arms as the realisation that I could lose my little girl sunk in.
The treatment at our local hospital wasn’t enough and Chloe needed to go somewhere more specialised. She was transferred to The Royal London Children’s Hospital. Intubated and unconscious, I held my daughter’s hand as Trevor and I travelled with her in the ambulance. In Basildon, Trevor had been told about The Sick Children’s Trust and that arrangements had been made to give us free accommodation once we got to London. I was in pieces and hadn’t even thought about where we would stay or what we might do.
Trevor took our things over to Stevenson House when we arrived, but I wasn’t ready to leave Chloe. When Trevor came back to the waiting room he told me that the house was only a couple of minutes away and he had met the manager who had shown him around. He explained that The Sick Children’s Trust had given us a room, totally free of charge, and that the staff couldn’t have been more welcoming, reassuring him that we were to treat Stevenson House like a ‘Home from Home’ and that the charity was there to support us.
It was hard for me to leave Chloe’s side that night, but knowing I was only going to be a few minutes away from her made things a lot easier. When I arrived at Stevenson House I was shocked – even in my grief I could see what an amazing place it was. The most comforting thing for me was that there was a phone in our bedroom with a direct line to PICU and we were able to call at any time to check Chloe was OK. Plus, the nurses on the ward had promised they would call me straight away if her condition changed, for better or for worse. That night I cried myself to sleep in Trevor’s arms, as the world around us excitedly got ready to celebrate Christmas.
Until something as terrible as this had happened I’d had no idea a charity like The Sick Children’s Trust even exists. But, without them we couldn’t have been there for Chloe. Paying for a hotel was out of the question, especially at a peak time of year such as Christmas, and it would have been a train to and from the hospital each day. Looking back, without their support I would’ve probably ended up sleeping on the street or not at all!
Over the next few days Chloe’s condition deteriorated and the doctor broke the news to us that there was a 50% chance that she might not make it through the week. He encouraged us to invite other family members to come to London to say their goodbyes. Trevor guided me to and from the ward to Stevenson House each morning and night, but everything was a struggle. Thank goodness the house was so nearby. My family came up to London and, because Chloe could only have one visitor at a time, Stevenson House became their base too. They sat in the sitting room together, and the staff at the house were fantastic – making them cups of tea and offering emotional support, along with entertaining Chloe’s brother Ryan who was only seven.
By Christmas Eve things were looking up. Chloe was still ventilated and unconscious, but the pneumonia was slowly getting better. You can’t imagine the relief. My life lightened and I began to notice things like the lovely Christmas tree in Stevenson House and the Christmas decorations, as well as the fact that there were little gifts around the place for the families who were staying there over the festive period. On Christmas Day, my sister brought Ryan to Stevenson House to be with us, which really helped. He was confused what with being so young, but Stevenson House helped him relax and he enjoyed opening his presents with us! There was even a playroom in the house so we were able to spend a bit of time focusing on him.
The best present of all came early evening on Christmas Day when Chloe woke up! I was there when she came round and it was amazing to see my girl open her eyes after five days in the dark. I will remember that moment forever and her smile as she reached out a pale trembling hand to touch me. Later on I left one of my sister’s with Chloe as I made my way back to Stevenson House to tell Trevor and Ryan the amazing news. Walking into the sitting room I told everyone that Chloe was going to be OK. A few minutes later in the lobby of Stevenson House, Trevor got down on one knee, took a box out of his pocket and proposed!
When Ryan and the rest of my family had finally gone back home, Trevor and I sat in the kitchen at Stevenson House and ate our Christmas dinner in the middle of the night, exhausted but able to enjoy our own mini celebration. The next day, Chloe was moved off PICU and three days later she was transferred back to Basildon. We finally took her home on New Year’s Eve and celebrated that evening with a sleepover in the living room all together. That was over two years ago and our family has grown since. Lucy-Ann arrived in October 2017 and we took both her and Ryan with us when we visited Stevenson House just before Christmas. Remembering how the little things had made such a difference to us when we were staying there, we took the families some Christmas gifts, as well as other household supplies.
Chloe is doing really well now. She now has a PEG tube, which means she is fed directly into her stomach and has filled out and looks really healthy. Now she is 17, she doesn’t have to wear uniform to school anymore and gets to go out for her lunch once a week. She is very artistic and loves to dance, but most of all she loves me, Trevor, Ryan and Lucy-Ann.
Now the trauma of what we went through is not so raw I feel ready to fundraise for The Sick Children’s Trust and give back just a little of what they gave to my family. I am organising a Big Chocolate Tea party and fundraiser on 28 April and have hired out ‘The Place’ in Pitsea for the occasion. We have already had some generous donations so I am confident there will be a good turn out and we can raise both money and awareness for the amazing work the charity does.
Emma Tapp, Chloe’s mum