Every hospital visit for Abi and her daughter Sofia has involved a 400 mile round trip, from Truro to Bristol for haemodialysis, often done in one day. This has not only been mentally and physically exhausting but also costs around £50 in fuel each time. In addition, there have been the extra costs for parking at the hospital and living costs away from home.
Making this journey occasionally might have been manageable, but Abi was making this journey three times a week with her one year old daughter. Just after recovering from the journey, they’d be preparing for the next drive back.
Sofia has spent most of her life in and out of hospital, fighting to survive. Yet, for Sofia hospital is three and a half hours away from home.
Unable to work and cover the costs of travel, Abi contacted Kidney Care UK for assistance. “The funds from Kidney Care UK were a life-saver for us and helped to keep us afloat in a very rocky and unstable boat. I don’t know what we’d have done without the financial support as the costs were mounting every week and this was so worrying on top of all the anxiety around Sofia.”
Sofia spent the first six months of her life in hospital and has been back regularly ever since. In 2015 she was in and out of hospital over seven months with chronic infections.
And now, having received the financial support from Kidney Care UK for travel costs, Abi is keen to fundraise for the charity herself and has set the goal of raising £1,000.
“I know what a difference the personal grant made to me at a very difficult time in my life and I want to be able to give back and help others too. Kidney Care UK has been there for us from the start and there have been far too many times when we could not have managed without them. I hope people dig deep in support of this amazing charity.”
Abi says, “When Sofia was born, we were told that she might not live a year, but she surprised everyone. She’s a real fighter and we’ve just taken life day by day with her. We all know what she is coping with every day and managing her medical complications is a life-long commitment but it’s one we wouldn’t swap. My mum is a real support to me and Sofia gives back so much joy and love to keep us all going.”
Sofia is currently on peritoneal dialysis and whilst this means that she can finally go to her local school again and see her friends, it hasn’t been without its complications with further infections needing hospital visits. In 2011 Sofia had a kidney transplant but this unfortunately failed within a week and the prospect of a second transplant comes with some trepidation for the family.
“We know we’re in great hands at Bristol Children’s Hospital and we need their expertise to help work around Sofia’s health needs but it’s hard to accept that there’s no-where closer to home for Sofia to receive her care. The travel adds to the challenges for us all and I hope that one day there may be changes for other families in similar circumstances.”
Abi adds, “Kidney Care UK also gave us a grant towards a holiday last year as we’ve never had a family holiday, but sadly Sofia was too ill for us to travel. We’re making plans again for this year, but we’re choosing somewhere close to Bristol in case we need to visit the hospital.”