"To know that Guilford Street House is there for us if we need it is a very comforting thought"

My daughter, Kimberley, was born with Goldenhar Syndrome, a congenital defect which can result in the incomplete development of the inner ear, nose, lip, soft palate and the lower jaw bone. Kimberley needs specialist treatment for her condition which means we have to travel to different hospitals across the country, travelling up to 185 miles from our home in Grimsby.

Kimberley, now nine years old, has already had three surgeries this year. Luckily we are usually able to plan in advance and book accommodation near to the hospitals where she is undergoing treatment so we can always be close by. However, after Kimberley’s reconstruction surgery in March last year at our local Diana Princess of Wales Hospital, her condition rapidly deteriorated. She developed an infection and was rushed to Great Ormond Street Hospital in London.

My husband, Adrian and I have another son Sean who was 12 at the time and fortunately he was able to stay with our family while we rushed down to London to be with Kimberley. We were so worried about her and didn’t want her to be on her own, especially as she was in a strange hospital far from home. The surgery itself puts so much strain on Kimberley and with the added pressure the infection was putting on her body, we didn’t know what was going to happen or what to expect when we arrived. 

That first night, I stayed on the ward with her and Adrian was offered a room in Guilford Street House; a Sick Children’s Trust ‘Home from Home’ located just a short walk from the hospital. It was comforting to be by Kimberley’s side but the wards are so unsettling at night it’s impossible to sleep; the constant worry, staff rounds and general noise of the medical equipment around you can get too much. The next day I was exhausted and Adrian returned to the hospital with the news that Tina, the House Manager had said that I could stay too.

I expected the accommodation to be a basic room similar to a hotel that would just enable us to catch a bit of rest at night, but I was overwhelmed to see that it was so much more than that. It was spotlessly clean and really felt like a home. There was a well-equipped kitchen, lounge and playroom for little ones and our room was decorated beautifully so we were able to relax and get some much-needed rest. The close proximity to Kimberley’s ward reassured us that if there was an emergency we could be there within minutes and we even had a direct line in our room to her ward so the nurses could reach us easily.

We spent all our time in the hospital by Kimberley’s side but whenever we did pop back to the house to grab something to eat or a cup of tea, the house staff always greeted us with a smile. If I was feeling down all I had to do was pop into Tina’s office and I knew that she would brighten up my day. Their kindness and generosity made the house into a home and I will never forget the support we received while staying in the house.

Kimberley recovered well and is continuing to have surgery. We are now under Great Ormond Street Hospital for all of Kimberley’s treatment so we have to travel up and down the country for her appointments but we don’t mind as long as she is getting the best possible treatment and care. The Sick Children’s Trust really do provide the best support for families in their time of need and to know that Guilford Street House is there for us if we need it in the future is a very comforting thought.  

Pippa Rawson, Kimberley’s Mum