Unless it happens to you...

Unless it happens to you, or someone close to you, you may not realise how vital a service a charity such as The Sick Children’s Trust provides. We are fortunate in the UK to have free health care at the point of need, but there are so many financial and practical implications when your child becomes sick that go beyond medicine and medical treatment. Our daughter, Gracie, was born in 2011 with cerebral palsy, and this has led to her needing a lot of intensive input from doctors and therapists in her young life, including several hospital stays. We are a little unusual as a family because Gracie’s dad, John, also has cerebral palsy; although this is a coincidence as the condition cannot be inherited. We had been staying in Filey, North Yorkshire, on our first family holiday since Gracie had been born, and a day or two before arriving, Gracie had been pronounced fit to travel. However, on holiday she developed breathing problems and she was taken to Leeds General Infirmary (LGI). We had the worry of Gracie being taken suddenly ill and needing wheelchair accessible accommodation (for John) in a city where we knew no-one. We live 200 miles away from Leeds in Ayrshire, Scotland. As it transpired, Gracie was more ill than we realised at first and she needed to be in the LGI for three weeks, some of the time in intensive care. The hospital itself could provide a room for one day’s stay, but although we were grateful to be able to finally get a sleep after being awake all night whilst Gracie was being stabilised by the medical staff, John had the added problem of the shower being inaccessible, so he was not able to do a basic thing like wash! We were considering checking into a hotel, an expense we could not afford, which we would have had to pay for with our credit card. Then a nurse mentioned Eckersley House. It made such a difference to us to be given a room there. They could not only provide us with a bed, but a home from home. It was such a relief to be able to stay minutes away from our daughter’s cot and to be able to concentrate on her, knowing that we had all our practical needs met. Staying at Eckersley House was better than staying in a hotel because we could cook for ourselves and wash ours and Gracie’s clothes. The house had wheelchair access to the rooms, there was a bathroom John could use and even the kitchen had been adapted. Disabled people are still often not considered when facilities and services for parents are planned, so it was so reassuring and affirming to us as a family to find that our needs had been catered for. John was able to be a father and be there for his daughter, as he wished, and he was also able to support me. Also, we were staying next to families in similar situations to ourselves and there were opportunities for us to talk about our children which really helped us get through this emotionally difficult time. It is hard enough to have a child who is ill and be a good parent and help to get them through their illness. You simply do not need the extra burden of debt at a time like this. It is vital that you are able to stay together as a family, with as few hassles as possible, so you can support each other through your child’s illness. Eckersley House just made such an immeasurable difference to us. Sarah Dever, Gracie’s mum Pic ref: Dever family.jpg Pic caption: (L-R) Gracie, John, Fionnna, Sarah Dever.