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Home Away from Kenya | Lydia's story

June 29, 2020

“Being in a ‘ward bubble’ is stressful. Having the bedroom at Ronald McDonald House to come back to after a long day on the ward and being able to have a bath, watch a film, make a coffee and sit down was fantastic to take care of myself.”

Guest Blogger: Ali

When my daughter Lydia was 12 years old, a non-cancerous mass was found in her brain stem called a cavernoma. A cavernoma is a group of blood vessels that haven’t formed properly and, if left untreated, can to lead haemorrhages and seizures. She had been presenting stroke-like symptoms due to a bleed. The symptoms had begun with a bad headache, followed by vomiting. She then presented with a ‘lazy eye’ and left sided weakness. Lydia’s physical condition continued to worsen and eventually her swallow was weakened. She began to have double vision and became deaf in one ear.

In no time at all, Lydia was sent for scans and assessments and we were told the probable diagnosis. With advice from many doctors and the support of wonderful friends, we made the very quick decision for myself and Lydia to fly from our home in Kenya back to the United Kingdom where Lydia could get the treatments that she needed.

Within a matter of hours, Lydia had to say goodbye to her brother, sister and father. She never faltered, she never really complained, she just got on with it – whatever was asked of her she did without question. It was not easy being separated as a family, but we believed it was the best option for us at the time.

On arrival at Royal Manchester Children’s Hospital, Lydia was monitored by teams of Neurologists and Neurosurgeons, and she received multidisciplinary intensive therapy. We were all aware that there was a long journey ahead, but we knew that as a family we could all put in the effort needed to see Lydia through this time of her life. When the nurses on the ward realised that we had travelled from Kenya to be there, they were quick to inform me about Ronald McDonald House Manchester and immediately sent over a referral for me to be considered for a room.

When entering the House for the first time, I felt such a sense of relief. I went over to check in and was shown around and immediately I felt accepted. I was ready to be supported after having spent three weeks on a small bed, not sleeping well at all, next to Lydia over at the hospital. I had a tour of the House and facilities and found the staff to be instantly friendly and welcoming. Not being completely focused on Lydia and her wellbeing for those fifteen minutes made me feel like I was important. I believe that when a parent or carer is strong, well-rested and well-fed they can be much better support to their sick child. In those moments when I first stepped into Ronald McDonald House Manchester, I instantly knew that this welcoming place would be a massive help and that was how I was going to be able to get through this ordeal.

Being able to bring Lydia out of the hospital and have sleepovers at the House was wonderful. Lydia loves cooking and back home we would often all cook together as a family. The fun of planning our meals and cooking together was a wonderful way of being ‘normal’ and we made some great dinners in the communal kitchen. I fondly remember one day when Lydia had come to stay at the House for a sleepover and we spent lots of time in the Play Room – it was such a laugh to play together. We even had a dance battle and had so much fun with our funky moves! The House also provided us with a place to be able to have our friends over, which was so nice to have as an alternative to the hospital ward as a place to meet and chat.

With my other children back in Kenya, it was fantastic to have my own space and a solid internet connection which meant that, despite the time difference, I was able to keep connected with my son, Ben, daughter, Chloë and husband, Keshule. We often spoke early in the morning before the children would go to school and I think it was a very important way for me to stay in contact.  I genuinely do not think Lydia and myself would have felt so close with family back home if it was not for the House.

Being in a ‘ward bubble’ is stressful – no matter how nice the nurses are, no matter how well your child is being taken care of. Having the bedroom at Ronald McDonald House to come back to after a long day on the ward and being able to have a bath, watch a film, make a coffee and sit down was fantastic to take care of myself. When it is possible to refresh, sleep well, shower, eat and relax a parent can be that much stronger for the sake of their sick child. Every day, I had enough energy to do the physio, the appointments and be Lydia’s greatest fan. This high motivation and positive attitude that we were able to maintain, is one of the reasons Lydia has recovered so well!

The staff were always on hand with a friendly smile, nod or a wave. I felt seen every day which was so great because it encouraged me to get through each day. The House team must talk to so many of the families every day, but they always treated me and spoke to me as if my story, my child, my situation was vitally important to their shift and for this I am truly grateful. When Lydia was very sick, she was not able to chat much and I really valued my interactions with the staff.

Without the two month stay at the House, I would not have had a space to call my own. I would have been sleeping on the ward, without a break and with nobody to share the responsibility with. I imagine I would have been constantly exhausted and that definitely would not have been beneficial to Lydia’s recovery. I felt so incredibly grateful that I had been given a ‘home away from home’ for the time Lydia was in hospital – a place that we had many moments that included joy and laughter. I am so grateful for people, both staff and other families, who were initially strangers to us showing kindness and compassion. Ronald McDonald House Manchester became a sanctuary for us and leaving was a bittersweet part of our experience.

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