“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