By Charlotte’s Mum, Jen…

“Charlotte was born on 21^st Nov 2019 at 29 weeks and 6 days due to a concealed placenta abruption. She had a HIE event and spent 10 weeks on the neonatal unit. She had a very rocky start with seizures and no suck or swallow. We found peeps by chance after a consultant whispered “HIE” to a colleague and we overheard him.

When she was 10 weeks old, she came home and covid hit shortly after so all therapies and support stopped and we isolated. We had so many admissions the first year-18 months but once she got her PEG those admissions lessened. She became quite well and we started to get out and live.

Over the years we went on holidays to Scotland, Ireland a few times and England. We met lots of friends and went to every single event going. It was through these events we started paddle boarding, Charlotte’s favourite hobby.

Peeps supported us over the years in many ways, we used the equipment fund for an applicator to make her iPad switch accessible, the coffee pot fund for meals while we were in hospital for prolonged stays, the peer support team for support and had funded counselling sessions. Peeps support never stopped once, even in bereavement. I was really impressed with how gently supportive they’ve been, there when we need them and checking in often.

One thing I’m keen for when people think about Charlotte is to remember she lived, not just that she died. Charlotte had a short illness in may 2026 which led to complications she never recovered from. If I could share any advice with families who’ve been bereaved, it’s to find your peers, and talk about your child often, celebrate them forever. I wanted to share our story because Charlotte had a life, a lovely, exciting life that was worth living. Her life was so much bigger than her death.

We have remained in contact with some people on her team and it just showed us how important she was to so many. We are grateful she was ours and I feel immense pride in having been her parents. In 6 years she had achieved more than some people do in 70. I hope in sharing our story that people will be inspired to live and to not be scared to live or to do exciting things despite how disabled our children are. One thing I can truly say is that we gave it our all and we helped Charlotte live a very exciting life.”