Poppy’s story

Poppy is a very determined little girl

Diagnosed with ventriculomegaly, a condition where the brain ventricles are enlarged due to the build-up of fluid, before she was born, Poppy was not expected to survive the pregnancy. But Poppy is a very determined little girl, Laura says. “I could feel her kicking, her kicks were so strong they took my breath away at times.”

Poppy was born by caesarean section in 2018. But the outlook wasn’t good, so the family took a brave decision. “When she was born, we made her an organ donor straight away because if we were going to lose her, she could give other kids a life. We thought, if we can do that then it’s not been a waste of her struggle, her fight.”

It was at this point that they were introduced to Forget Me Not. “As soon as I heard the word ‘hospice’, my mind went straight to loads of beds filled with people who are poorly. So I was like, I’m not sure if I want to go there. But when I came here I just felt so relaxed, it had such a calm feeling. It’s strange but, knowing we had the support from Forget Me Not, just put the thought in my mind – ‘do you know what, we can do this’.”

Now 5 years old, Poppy has continued to fight. She had a shunt fitted at just two days old – this drains fluid out of her brain and into her stomach. She has epilepsy, hypermobility and global development delay. She has to be watched constantly in case of a seizure or her shunt failing. Which it did in 2021. Only Laura and Richard’s quick actions saved her life. “I’ve never been more scared in my life. I thought we were going to lose her.”

“And that could happen anytime – which is terrifying. I can’t rest. The only time I rest is when she comes for respite at Russell House. Because she’s surrounded by people who know exactly how to deal with her, they’ve seen everything. And that’s a massive weight off my mind. And I can finally sleep.”