“A good night’s sleep made all the difference”: Sophia’s story

Holly arrived at Ronald McDonald House Manchester just before Christmas 2021 after her daughter Sophia, who was then just three years old, developed complications caused by Covid-19. Holly went on to stay at the House for three months, describing the ‘sense of peace’ she felt there and the comfort she got from being able to keep her family together while Sophia was being treated in hospital.

Guest blogger: Holly

We found out about Ronald McDonald House Manchester when Sophia was admitted to Ward 78 at Royal Manchester Children’s Hospital (RMHC), and the staff spoke to us about trying to get us a room there. Thankfully, a room became available and when we first entered the House, we felt overwhelmed but also a sense of peace. It was a lovely, homely environment where we could spend time together whilst we were away from our actual home.

We discovered that Sophia had encephalitis (an inflammation of the brain), which was mainly caused by her contracting Covid-19. She had initially been transferred on life support from our local hospital in Wythenshawe to Sheffield Children’s Hospital Paediatric Intensive Care Unit (PICU) but eventually, we were transferred closer to RMHC, where Sophia would undergo intensive rehabilitation. We were so fearful of not being able to be close to our daughter. We felt concerned that the hospital stay was going to be a very long journey, not only for us, but for Sophia’s twin sister Alyssa as well.

A memory that really stands out for us during our time at the House, is Valentine’s Day. The staff made up family frames for everyone, which was so sweet. Also, at Christmas time, staff gave presents to the children, and we had festive chocolates delivered to our room – this was a very nice touch. Staying in the House had a positive impact on our family, allowing us to be close to Sophia, and Alyssa was finally able to visit her twin in a non-medical environment, where there were no scary, beeping machines.

The surroundings were more personal; it was somewhere safe and comfortable, where we could enjoy time together as a family. It also had a positive impact on Sophia’s recovery, due to us being well rested and therefore able to give her our full care and attention when she needed us. We could also have extended family visit her at the House, which helped her to start to recognise relatives again, and made the whole rehabilitation process less stressful.

We are from Greater Manchester, so we wouldn’t have had to travel too far to stay with Sophia, but the ward was always very busy and had a lot going on with several other unwell children. It was not the quietest place to get some sleep and to get ready for another stressful day, with Sophia being unsettled as well. So being able to get a good night’s sleep made all the difference.

When we left the House, we were overwhelmed but also extremely grateful for all the love, support, and care from all the House staff. Unfortunately, I haven’t visited since we left, as I can’t bring myself to go back yet due to the ongoing trauma following Sophia’s shock illness, however, I do think that if you can go back then it’s a wonderful thing to do.

My advice to other families who have a child in hospital is to acknowledge your feelings and emotions; it is difficult to be in a hospital environment for a while, whether that be days or months. It is okay to take some time for yourself and not feel guilty about it, and the staff are always there for you, talk to them and let them know how you’re feeling. If you want to fundraise or donate to Ronald McDonald House Charities UK, then go for it! This is a wonderful charity; they support so many families, who can feel like they don’t have many places to turn to.

Sophia is now five, a true survivor who is going from strength to strength, but she still lives with multiple health issues. She was one of only 20 children in the UK to have contracted Covid-related encephalitis and I am passionate about raising awareness of her condition. I set up Sophia’s Encephalitis Journey Facebook group to help shine a light on the illness, and to support others who might be on a similar journey.