Louise and Ethan’s story

“According to doctors, there was more chance of us winning the lottery than having two children with very complex health needs caused by completely different conditions.

“My daughter Louise was eight when she died at Demelza’s hospice in Kent. Her little brother Ethan was just 18 months, and to our knowledge, would grow up and live a happy and healthy life like all children should.

“In the months leading up to Louise’s death we shared wonderful times together as a family at Demelza. However, in 2013, following months of Louise being in hospital, we returned for what was to be our last precious time together as a family of four. At first, we lapped up the amazing food and relaxed in the knowledge that our little girl was receiving the best possible care. But things soon took a turn for the worse when Louise developed an infection and wasn’t responding to treatment.

“From the moment of finding out that Louise had a serious condition when she was just a baby, I knew that when the time came, I wanted her to die at home. But now I’m relieved she was at Demelza.

“I remember feeling overwhelmed with sadness and a nurse coming into Louise’s room and opening the curtains – she seemed really chirpy. “We’re going to do some painting”, she said. “No, we’re not!”, I responded bluntly. But within an hour we were laughing together and reminiscing about happy times. Louise’s grandparents were there too. I still have all of those canvases of our hand prints – those wonderful, precious memories – and I’m so grateful that I do.

“If we’d been at home, we would have been wallowing in despair; Louise wouldn’t have wanted that. She was at peace with her family around her. If we’d been at home there’s no way I could’ve done things like painting. In that moment, the thought of dipping her little hand into paint would just not have crossed my mind – I would’ve felt guilty for trying to do something fun at our most devastating time. But at Demelza you don’t have to feel guilty for laughing – or crying for that matter. It’s ok to feel every emotion you are feeling.

“And it wasn’t just the emotional support that got us through. Demelza helped so much with making arrangements after Louise died; I wouldn’t have known where to start. But our journey with Demelza didn’t end there. The support we’ve received to this day has been incredible and I will forever be grateful.”

“When I was pregnant with Ethan I naturally felt anxious but doctors had no reason to believe that he would have the same condition as his big sister. But, after being born prematurely at 35 weeks, Ethan underwent major surgery to fix a faulty valve in his heart. It was a traumatic time and my own heart was split in two knowing my little girl was at home needing 24-hour care.

“After Louise died, our concerns about Ethan began to heighten. Just before he turned two, he stopped in the middle of the room, his eyes rolled up and he dropped to the floor. After being diagnosed with epilepsy we sadly saw a rapid decline in him.

“There is a never-ending list to his problems – a decline in muscle tone, heart, mobility and eye defects to name but a few. I sometimes compare our lives to a game of ‘Whac-A-Mole’, you think you have everything under control and then something else comes up. When we were referred to Demelza, I remember thinking: ‘Thank goodness’.

“Finally, we were getting some help. I was exhausted, Ethan was exhausted. I felt overwhelmed with relief but I also felt really sad – ‘How are we here again?’ All of my hopes and dreams for my son felt dashed.

“When COVID-19 struck we were advised to shield at home and it was very intense. As things started to open up we were finally able to welcome the Demelza East Sussex Community Team to our home for visits.

“Going from lockdown to strangers coming in took some adjusting but everyone was so patient and understanding; they wanted to help. Within a few months, we’d built great relationships with the nurses and health care assistants, and for the first time ever, Ethan was given the opportunity to be taken out and have independence away from his parents.

“There was one visit when Ethan was poorly and just wanted his mummy, so the Demelza heath care assistant sat down with his younger sister Isabella and read her school book with her. I’ll never forget what that meant to me as a mum who felt incredibly torn- that kind gesture meant that she wasn’t pushed to one side. Her needs were not neglected which can sometimes so easily happen to siblings of children with a serious or terminal condition.

“The future is very uncertain for Ethan but with the help and support of Demelza we can focus on making life as great as possible for him. Demelza will always hold a special place in my heart.”

Harriet, mum to Louise, Ethan and Isabella