For the last 18 months I have been taking care of my seriously ill daughter, Ella. In the summer of 2015, Ella had a horrific accident that damaged her oesophagus. After a lengthy stay at our local hospital, and surgery to fit a feeding device at another, we were referred to Great Ormond Street Hospital (GOSH), over 130 miles away from home. We were traumatised – our world had been turned upside down and our perfectly healthy daughter was critically ill. It hurt us so much to see her this way.
In April 2016, Ella had her major surgery at GOSH to remove her damaged oesophagus. Her surgery lasted for ten hours. Initially we were supported in the parent accommodation at GOSH, but on the day of her major surgery we had to check out and find somewhere to wait for news on our daughter.
It was a long and harrowing day. We live in South Wales so we were miles from home and miles away from the support of our friends and family. But thankfully, that afternoon we received a call to say accommodation had been found for us. This accommodation was Guilford Street House, just a few minutes’ walk away from the hospital. Guilford Street House is run by a charity called The Sick Children’s Trust which gives families with seriously ill children a place to stay for free.
We were so grateful. It was the distraction we needed on what was a very awful and traumatic day. And Guilford Street House was somewhere we could privately wait for our daughter to come out of surgery. We were given the warmest welcome by the loveliest lady, Tina Thake, who manages the house. She and The Sick Children’s Trust gave us something so important – a free ‘Home from Home’ which kept us close to our daughter for three weeks
Ella pulled through her long surgery and was admitted onto the paediatric intensive care unit (PICU) where she was put into a medically-induced coma. She was in a coma for a week. This time felt everlasting, so we felt so fortunate to have a private and comfortable place to retreat to at Guilford Street House to help us rest and regain our strength to face the next day. Here we could try to cope with what was happening, while knowing we were just a few minutes’ walk away from Ella’s bedside if anything changed. We could sleep in a quiet and restful place, and felt supported by having other parents in the house who were going through similar situations. Also, little things like being able to wash our clothes and make a cup of tea helped us retain a bit of normality with as little fuss as possible.
Once Ella woke from her coma she was transferred to the high dependency unit. Here only one parent was allowed to sleep by her bedside, so Guilford Street House remained an important part of our lives. Ella was comforted by mine and her Dad’s continued presence and we were comforted by having each other’s support, alongside a place to take time to get our heads around the situation.
What the ‘Home from Home’ and The Sick Children’s Trust gave us was priceless. We would’ve really struggled financially if we had to fund our stay in London. We felt blessed to be so close to Ella and to be there together.
When Ella was eventually discharged, we took her to see Tina. It was a very emotional moment for us, we felt like Tina had made it possible for us to be there by our daughter’s side. Because of Tina and The Sick Children’s Trust, we could both be there for Ella, every minute of every day supporting her through her recovery. For Tina seeing Ella – the little girl she knew had been through so much – was a pleasure. It was a pleasure for her to see that Ella was making a miraculous recovery.
Ella has had four further surgeries since our stay at Guilford Street House, but we are now both back to work and Ella is attending nursery. And we’re almost back to the normal life we had before this nightmare began.
We are extremely thankful for the support The Sick Children’s Trust gave us and the expertise of her doctors at GOSH, Mr Curry and his team. And since we’ve been home, we have been fundraising for both as a way of saying thank you.
Stacy and Clark, Ella’s parents.