Chelsey’s story

When my fifteen year old daughter Chelsey was rushed into hospital with chronic Crohn’s disease I felt completed distraught. After eight days at Lewisham Hospital, Chelsey’s condition was not improving and she had to be transferred to The Royal London Children’s Hospital in Whitechapel. My husband and I travelled through rush hour traffic every morning to visit Chelsey making the whole experience increasingly stressful and tiring. Alongside the frustrating and energy sapping commute, we found it heartbreaking when, every evening, we had to leave our daughter’s bedside knowing that we couldn’t be close to Chelsey at night.

Fortunately one of the nurses on Chelsey’s ward, perhaps noting our distress, recommended that we enquired if rooms were available at Stevenson House, free accommodation next door to The Royal London Hospital provided by The Sick Children’s Trust. I was unsure as to what to expect but welcomed the opportunity to stay close to my daughter. When I arrived at Stevenson House I was completely shocked; the house was both spacious and comfortable and boasted a large kitchen and communal area. I immediately felt at home and couldn’t have been more impressed by the management team whose friendly welcome and continual support throughout my stay improved my moral dramatically.

I was given a room with a double bed and a pull out single bed which allowed my husband and Callum, my seven year old son, to stay with me at Stevenson at the weekends. This provided the family not only with the chance to visit Chelsey but also quality family time and a sense of normality amidst the turmoil. Callum absolutely loved the house as he was able to play with the large selection of toys and the children of other families staying there. Speaking with other families was a really beneficial experience; we were all united by our unfortunate circumstance and raised each others spirits. Having this support structure and the close contact with my family was absolutely vital as Chelsey’s condition continually worsened. Her weight had plummeted to under six stone and she needed a potentially life saving operation to remove part of her small intestine.

To our relief the operation was successful and during her recovery Chelsey was able to visit Stevenson House herself to enjoy lunches and dinners with the family. She was so impressed with our ‘Home from Home’ and seemed glad that it was there that we had been staying during her difficult ordeal. Chelsey has now recovered well, has put on weight and is back at school like a normal fifteen year old. I honestly cannot thank The Sick Children’s Trust enough for the support that they gave our family during our darkest period and only hope that more families can take advantage of this wonderful charity during their time of need.

Sharon Bennett, Chelsey’s Mum

We are so grateful to Guilford Street House

In January 2011, at just four weeks old our daughter Kacey was diagnosed with severe bronchiolitis and admitted to University Hospital in North Staffordshire.

After a few days the doctors realised that she wasn’t recovering as they had hoped so they decided to take a CT scan. This showed her windpipe was so narrow it was the width of the tip of a ball point pen and one of her arteries was wrapped around the windpipe. All of this was causing her to struggle with her breathing – they said it was a miracle Kacey survived the first few weeks of her life with this condition going undetected.

She was immediately transferred to Great Ormond Street Hospital (GOSH) in London for an operation to correct this, where my partner Victoria and I joined her.

This was a long way from our home in Stoke on Trent and when we arrived there we were so disorientated, the last thing we thought about was finding somewhere to stay close to the hospital. Thankfully a nurse on Kacey’s ward told us about The Sick Children’s Trust and luckily when we called they had a room free.

We stayed at The Sick Children’s Trust’s ‘Home from Home’ at Guilford Street House for 18 days from March 14th to April 1st 2011.

At first our younger son Logan, who is just two years old, stayed with Victoria’s mum until we got settled in London, but after a week she couldn’t afford to take the time off work so Victoria got the train back up to Stoke and picked him up and brought him back to be with us.

We had been apprehensive about bringing him down to London but all our fears soon subsided when we saw the house. It was just lovely, really warm and welcoming, a true ‘Home from Home’.

Logan loved being at the house and playing in the playroom with all the other children in the house, as this gave him a real sense of normality. We also took him to the park across the way and also London Zoo for the day to try and de-stress us all and get back that sense of family we had before all of this happened.

We were so grateful he could stay with us as I know the hospital can’t accommodate siblings. We all wanted to try and remain together as a family as the only other option would have been for one of us to remain at home in Stoke on Trent, which would have been the very last thing we wanted to do.

Staying at the house was brilliant. We didn’t realise how expensive London was and if we had had to stay in a hotel and eat out every night we would have been living on an extremely tight budget. Being able to cook in the kitchen and wash our clothes in the house and not have to take them to a laundrette really helped us out financially.

Also, as neither of us drive we would have had to use public transport to get between the hospital and Stoke on Trent without the charity’s support. With Guilford Street being just around the corner this was a great help as we could just walk from our room and not incur daily travel costs.

Tina, the house manager, was also very helpful in making us familiar with our new home and surrounding areas, as were other families who were staying in the house. We made friends with another family from Stoke and it helped ease the stress to talk to them and share our similar circumstances.
Kacey is doing really well now and we have been at home more than three months. On our last trip to GOSH we were told we can now be treated at our local hospital for follow up appointments, so fingers crossed we won’t be needing support from The Sick Children’s Trust in the future. However strange it seems, we will always have fond memories of our time at the house, and think back positively on all the support we received and friends we made during our stay.

By Carl Lewis, Kacey’s dad