Sophia's story

“The Hospice really is our saving grace.”

Every month, Sophia stays at St Oswald’s Hospice Children and Young Adults Service for short breaks of three nights, providing a home-from-home environment and specialist medical care for her complex condition. Here, mum Megan tells us how the whole family benefits when Sophia is at the Hospice, giving her and Sophia’s dad, Lee, time to recharge and see friends and family.

Megan said:

“Sophia has been visiting St Oswald’s Hospice since 2018. I can’t imagine our life without the Hospice and the support we receive from them. No words would ever be enough to thank them for the outstanding care they give to all the children and young adults.

“Sophia attends St Oswald’s Hospice for three nights once a month. She gets so excited when I tell her it’s ‘time to go to St Oswald’s’. Sometimes I leave it until the very last minute before I tell her, otherwise she gets far too excited and impatient – she just wants to get there and get settled in.”

Megan tells us how she felt when Sophia was first referred to the Hospice:

“For so long I had put off the idea of any additional support. I think, initially, I felt scared and also had a bit of ‘mum guilt’. I didn’t know what to expect, so I just put it off, I guess. However, a few people I knew spoke so highly of St Oswald’s Hospice that when it was suggested again, I decided to have more of an open mind and agreed to a visit.

“I still remember that first visit like it was yesterday. I had never felt more welcome and at home than I did the day we first took Sophia for a look around. The staff were so incredibly kind and welcoming – I remember getting back in the car and smiling the whole way home because I felt so happy. That made me think about how happy it would also make Sophia if she were to attend for short breaks – so I took the plunge and went ahead with the referral. We’ve never once looked back.

“Other than St Oswald’s Hospice, Sophia is always with me, her home staff or her dad. Due to her medical needs, family members don’t feel comfortable having her overnight or for long periods of time, which is understandable.

“Sophia spending short breaks at St Oswald’s Hospice gives both sides of her family time to recharge. Of course, it’s nice now and again to go out and socialise with friends, but it’s the little things that some people may take for granted that make the biggest difference to us.

“Turning off late-night alarms for medications and feeds, not listening out for oxygen, heart rate, ventilator and IV machine alarms during the night (although I swear I still hear those in my sleep!).

“The staff at St Oswald’s Hospice are the only people in the world I trust to do everything Sophia’s health requires.

“That trust has been built up over the last eight years and I cannot imagine our lives without the Hospice.”

Megan continued:

“I wouldn’t change any part of Sophia or her needs. Yes, as a mum of such a complex little girl, life can sometimes be very difficult and challenges are always being thrown our way, but the help and support we receive from St Oswald’s Hospice makes life that little bit easier.

“Over the past two years, Sophia’s health has sadly declined significantly, and I’m really unsure what we would have done without St Oswald’s Hospice during the most difficult time of her life.

“They supported our transition from hospital to home after being in for almost a year, with yet another life-changing diagnosis and life-changing medical equipment.

“They helped not only Sophia adapt to life outside hospital but also supported my own anxieties following such a traumatic time.

“I’ve had the pleasure of meeting not only some of the most amazing children and young adults who also attend the Unit but also their parents.

“They obviously ‘get it’ and understand your struggles, your pain and worries. It’s so lovely to have the network of other parents so we can all support one another.”

Huge thank you to Megan and Sophia for sharing their story.