‘Nobody would know I was born early if I didn’t mention it’ – Lilia’s story

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10 year old Lilia, who was born 13 weeks early, wants to reassure parents on neonatal units that their babies can grow up into happy and healthy children.

My name is Lilia and I am almost 10 years old. I was supposed to be a summer baby. I was SUPPOSED to be, but I had other ideas. I was born on April 1st, and despite it being April Fool’s Day, it was DEFINITELY no joke as I was born just 27 weeks and one day into my mum's pregnancy.

I weighed only 2lb 3oz which apparently is the same as a bag of sugar. I have no idea why I decided to make an early entrance, but maybe it explains why I'm so impatient now! Fortunately, I don't remember being in hospital, although it was my home for the first 72 days of my life. I wasn't just small - I had lots of complications and conditions I had to overcome before I could leave Rochdale Infirmary. Some of them were life threatening, and they all sound very complicated to me.

My mum tells me that I had sepsis, necrotising enterocolitis, patent ductus arteriosus, chronic lung disease and also had to have two blood transfusions which she said transformed me into a pink jelly baby!

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When I look at pictures of myself from in hospital, I can't believe they're me, because I look like an alien! I also suffered a small bleed on the brain, which meant that the doctors couldn't predict how I would develop. They presumed that I would always be small for my age, that I would be often sick, and that I may not meet my milestones, and struggle to keep up at school. As if that's true! I am taller than most of my friends, I am rarely sick, I have met all of my milestones, and I am doing really well at school.

In my opinion, I think the reason I'm not all the things that the doctors thought I would be is because of my determination, bravery and positivity. I also have a great family who have supported me along the way, and my big sister Helena has always taught me things which I soak up like a sponge.

Now, I especially love reading, and can whizz through a book in no time, but that's probably because I never put a book down, even in the bath! My favourite author is Jacqueline Wilson, and last year I even got the opportunity to meet her. I also enjoy writing, and when I was seven years old, I won a writing competition – my writing got published in a magazine and my vice head-teacher read it out to the whole school the next day when I showed it to her.

I also participate in mixed martial arts, and I am currently training for my fifth belt, which will be green. My ambition is to continue karate until I'm a black belt, and maybe one day small children my age will be calling me Sensei! I enjoy swimming too, and have nearly completed all the stages in the programme. Having hobbies and interests has helped me to develop new skills.

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I think life as a child who was premature is completely normal, and actually, nobody would know I was born early if I didn’t mention it! It also makes me feel special. Every year on World Prematurity Day I feel proud to wear my special Bliss badge on my school cardigan. Like everyone, I have a few flaws but, of course, nobody’s perfect and my teacher, Miss Bradley, says to focus on the things you're good at.

So, to any parents with a baby currently in hospital, it must be very scary and hard to take in. But my advice would be to try to ignore all the tubes, wires and beeping machines and focus on the beautiful living soul that you've given birth to.

Whether your child is premature or not, he or she is unique and special in his or her own way. Take one day at a time and - as another piece of advice - you should take lots of pictures and videos of your child when they are in hospital so you can look back on them.

I have a memory box that I love to look through; it contains items from when I was in hospital such as a tiny nappy (clean, of course), my first vest, name tags and even some wires that were attached to me. Perhaps you could make one too!

I hope that my story will inspire more premature and sick children to live their best life, and that they will try and enjoy as many experiences as they can. As I like to say: YOLO! (You Only Live Once).

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