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Ellen's story


I was a premature baby born in 1993 with my fraternal twin Elliott at 25 weeks. I was born weighing just 800g! I had no eyelashes, eyebrows or fingernails. My dad could hold me laid down in the palm of his hand and my own hand was as small as my mum’s thumb nail. Sadly, my twin Elliott passed away a few days after our birth. I think somehow, I just knew Elliott had passed and knew my parents needed me, so I continued to grow and develop and with the help of my parents and especially the neonatal staff I continued to get stronger and stronger.

My parents were made aware of Bliss’ work when a neonatal nurse informed them that a lot of the equipment used in my day to day care was donated by Bliss. My incubator or “little greenhouse” as my mum calls it, that I spent months in was donated by Bliss. I owe everything to the neonatal nurses that looked after me and Bliss for the assistance and training they gave those nurses and the staff in the neonatal ward I was on. I will always be beyond grateful to Bliss for well, keeping me alive.

Ellen with her mum

Fast forward 23 years and I started getting into running. As a child due to complications from being premature I couldn’t run without being sick or having terrible coughing fits however luckily, these subsided as I got older and by my early twenties I LOVED running. I signed up for my first 10k and knew immediately who I wanted to run and fundraise for. And that’s where my relationship with Bliss as an adult started. (I have since got a place in the London Marathon 2018 to run for Bliss and I am beyond honoured and excited to run representing Bliss. I wear my running vest with such pride, I hope to make my parents and Elliott proud.) It was from my involvement in my running that I then found out about voluntary roles with Bliss, and the Ambassador program. I knew immediately this was something I wanted to do.

The Ambassador program is the best way to connect with people in your community. My personal favourite thing about being an Ambassador is getting to meet other people also affected by a premature baby or having been a premature baby themselves. I have met parents, uncles and aunties, siblings, cousins, grandparents, neighbours and friends all affected by knowing a baby born prematurely. Or other premature babies themselves. I have heard so many stories and shared my own with many people. I have found my work for Bliss to be so incredibly rewarding, not only in fundraising, to ensure that every baby born premature or sick in the UK gets the help and support they need, but in also being a shoulder to cry on and a person to listen and offer support to someone.

I have had many tearful conversations (both sad and happy tears) with people sharing stories, nothing beats that feeling of connecting with someone who was once a stranger and sharing something so personal between the two of you. I love it. Being able to tell the parent of a premmie baby in neonatal care right now, that I was once that small and fragile, and provide hope and encouragement is the best feeling in the world. I know the work I do as an Ambassador with Bliss really makes a difference to people’s lives and I want to continue to do it for the rest of my life!

Inspired by Ellen's story? Find out how to become a Bliss Community Ambassador here.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages

If you would like to share your story with Bliss, please fill in our online form 

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