Staying at Guilford Street House meant that Skye was able to have both her mum and dad with her the whole time, and we could stay together as a family.

On Tuesday 15 March my 16 month old daughter, Skye, was under the weather, so my husband, Gavin, took her to the doctors. The doctor gave her some antibiotics for a chest infection, and a few days later she seemed a little more aware. She started to play, but by Thursday it was clear she was really poorly, she wouldn't leave my side and was very sleepy. Her temperature was still incredibly high so I called NHS 111 and Gavin and I took her to A&E. She barely woke up while they were checking her over. I kept saying to Gavin I was worried it was meningitis but there wasn’t a rash anywhere, so we told ourselves that it couldn’t be.

They sent us up to the children's ward where they took blood tests and put a cannula in and she woke up a little and had something to eat for the first time in days which was a relief. The doctor said she had a bacterial infection and we would have to stay in for two nights, but at 11.30pm, we were woken up by another doctor who said Skye’s infection was viral and we should go home where we would be more comfortable. I was still very worried about Skye, but we took the doctor’s word and went home.

The following day Skye was still very poorly, and as the day went on things went downhill. We called the hospital ward and they told us to give her some Calpol and ibuprofen and put her back to bed so we did, but the next day I went into her room to find her just lying there, awake but hot to the touch. As I picked her out of her cot her eyes were twitching and she wasn't moving, so I called NHS 111 and they called an ambulance.

We waited in A&E for ages but eventually Skye had a chest X-ray. By this point I was in floods of tears; seeing my daughter like that was absolutely horrific. As they started taking more bloods, her right eye pupil went absolutely huge so they rushed her down for a CT scan. She wasn’t reacting to anything, she was like a dead weight just lying there. I fell to the floor crying, praying that she would be ok.

Nothing showed up on the CT scan which was good, but then even worse news came. The doctor used the word ‘meningitis’ and results came back and confirmed Skye actually had pneumococcal meningitis, and that's why there was never any rash. Our world started to crumble around us; watching my daughter go through this literally broke my heart. Skye began to have seizures, which got worse and worse as time went on. She was in a really bad way, so the doctors gave her some medicine to calm her down.

We were then told we needed to be transferred to London because she needed specialist treatment. Her body was fighting the medication and her seizures were out of control. The plan was to put in a breathing tube, send her to sleep, and call a response team to take her to Great Ormond Street Hospital (GOSH) in London as soon as possible.

Nothing could have prepared us for that night. Skye was knocked out by drugs, she had a breathing tube, and she was hooked up to all these machines. After hours of travelling, we arrived at GOSH at 4.30am.

Skye went straight into intensive care. My tiny baby had no idea where she was. Still fast asleep, they wanted to keep her under sedation because they were planning to do an MRI scan and this would make her more comfortable. It felt like our world was falling apart right in front of us; we were miles from home and had nearly lost our daughter.

Then we were given the keys to Guilford Street House, a ‘Home from Home’ run by The Sick Children’s Trust and managed by Tina, who was absolutely fantastic. We were told we could stay here until Skye was able to go home, which was brilliant. Because she was in intensive care, we weren’t allowed to stay by her bedside, so being that close if she did need one of us was one less thing to worry about.

The following morning our hearts were in our throats. Skye went down for her MRI and we just felt so sick. A couple of hours later we were taken into a room where about eight doctors surrounded us telling us the worst news we could ever imagine. Skye had severe brain damage. They gave us the worst case scenario; she may never walk, talk, move, see, hear or even breathe on her own ever again. They said she may not even make it to adulthood.

Staying at Guilford Street meant that Skye was able to have both her mum and dad with her the whole time, and we could stay together as a family. Being from Brighton, we don’t have friends in London, so the House Manager Tina was brilliant; having someone else to talk to after a hard day was a real help.

It was also lovely for my husband and I to have some sort of normality and be able to eat together, at a table, in a homely environment. To be able to leave hospital and have some private space, just the two of us helped a lot. Whether it was to cry or talk, or just get away from all the noises on the ward.

We were in intensive care for nine days and it took four attempts, and a camera down her throat, before she could manage to breathe on her own. Then, when she was transferred to the neurology ward, we were told they could start waking her up and find out the extent of her brain damage. Skye started to wake up really cranky, not that we could blame her. She still had a high temperature, which they were worried about but it also looked like she had the flu. The more she woke up, the more we realised she had involuntary movement in her left side. It was awful to witness, but at least we were right there with her through it all.

After GOSH had done all they could for us, we were transferred to Brighton hospital so we were closer to home. After a week I was very used to taking care of Skye’s feeds and medication so they decided to let us go home.

Now, nearly a year on, Skye has truly amazed us all. She attended rehabilitation for ten weeks at Chailey Heritage Clinical Services and can now smile, laugh, grab toys, see, hear and recognise people, all things we thought she might not ever be able to do. The hope continues and we can't wait to see what else this amazing, beautiful daughter of ours will do. Her strength and bravery has always got us through everything and we know it will continue to amaze us.

Gabi Draper, Skye’s Mum