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Louise and Ethan’s story: More chance of winning the lottery

Children’s hospices provide vital support for children and young people with a life-limiting or life-threatening condition. Everything they do is #ForTheChildren –helping families make the most of their lives together, no matter how short.

This Children’s Hospice Week we are showing how important each individual child is to the amazing local hospices who care for them. They provide a lifeline #ForTheChildren like Louise and Ethan.

Precious memories

Louise’s parents found out she had a serious condition when she was just a baby and would die young. They always thought the right place for her to die would be at home, but looking back they are relieved she was at their local children’s hospice.

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.

Louise was eight when she died at Demelza Children’s Hospice in Kent. Her little brother Ethan was just 18 months, and to his family’s knowledge, would grow up and live a happy and healthy life.

More chance of winning the lottery

When I was pregnant with Ethan I naturally felt anxious but was reassured by doctors; they had no reason to believe that he would have the same condition as his big sister. And apparently there was more chance of us winning the lottery than having two children with very complex health needs caused by completely different conditions.

But our little boy was not given the easiest start in life. After being born prematurely at 35 weeks, Ethan underwent major surgery to fix a fault valve in his heart. It was a traumatic time and my own heart was split in two knowing that my little girl was at home needing 24-hour care. So, when the time came that Ethan only needed paracetamol, cuddles and milk, I jumped at the chance to bring him home.

That little snippet of ‘normality’ that we had all been longing for was sadly short-lived. A few weeks later he contracted bronchiolitis and was back in hospital on oxygen. In the months that followed it became clear Ethan didn’t have the best immune system and we were in and out of the GP surgery with him, while also looking after his big sister.

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. These vacant episodes continued at nursery and after being diagnosed with epilepsy we sadly saw a rapid decline in him.

Ethan started at mainstream school but it soon became clear that he was severely autistic and there was an element of a learning disability. He now would require a special needs school instead. We knew in our hearts that our son wasn’t going to face a straight forward future we had originally thought.

When Ethan was about seven he started walking differently and became much more unsteady on his feet. He now struggles to walk longer distances and needs a wheelchair regularly.

At this point we didn’t know where to turn. Ethan was in and out of hospital with no clear diagnosis. As a family we needed help.

Demelza held our hand

When we were referred again 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.

The Demelza Community Team has made an incredible difference to the family’s lives though and for the first time ever, Ethan was given the opportunity to have independence away from his parents.

While he goes out and explores wonderful new experiences with Demelza’s nursing and care team, I can spend much-needed quality time with our other daughter, Isabella. I can’t put into words how much it means to be able to give her some dedicated time.

In the two years since Ethan has been accessing Demelza’s services, there have been complications with his heart which will likely mean further surgeries in the future. Some days you just can’t believe what is happening. 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. Demelza has held our hand and supported us throughout.

A special place in our hearts

When I first heard of Demelza I couldn’t bear the thought of sending my little girl to a hospice. So, for years we went without help. After visiting the hospice in Kent, I remember thinking: ‘You silly woman! Why didn’t you do this earlier?’ I regret not accessing Demelza’s services sooner.

The future is very uncertain for Ethan. With an undiagnosed syndrome, no medical professional can now confidently say that he will go on to live a long life. With Louise it was all a lot more mapped out.

Ethan requires such a high level of care and support throughout the day and night which can take its toll – and not forgetting that I’m not a robot; I’m a human being – so any support for me is so appreciated too. Now, with the help and support of Demelza we can focus on making life as great as possible for Ethan.  Demelza will always hold a special place in my heart.

Harriet, mum to Louise, Ethan and Isabella  

Children’s hospices like Demelza provide vital support for children and young people with a life-limiting or life-threatening condition. Show your support #ForTheChildren this #ChildrensHospiceWeek.

Family stories