HETTIE Rayson lived for just a few short weeks before Worcestershire Royal Hospital chaplain Rev Dr David Southall conducted her funeral service.

She was born with Edwards’ syndrome, to the devastation of parents Marie and John, of Rushwick.

But Henrietta Marie Blackwell Rayson had a huge impact in the short time she was with us

HETTIE, when I first met you it was in the operating theatre being cuddled by Mom and Dad; it was there that I baptised you.

But you were strong: and I saw you later in one of our maternity rooms, where I blessed you and wrote in your children’s’ Bible.

I was privileged to take your funeral, some weeks later, where your Mom and Dad told us about how your short time on earth made such a difference. So here, with their permission, are some extracts from that tribute.

“When we first found out about Hettie’s condition, we were told that babies with Edwards’ Syndrome are ‘not compatible with life’.

“Naturally we were devastated, but we believed that Hettie had chosen us as her parents, knowing that we would support her in any and every way we could, including giving her every chance at life.

“Before she was born, we already knew that Hettie was a special little girl, full of character; she used to turn away on scans, and hide her face behind her hands.

“She also used to kick Marie before mealtimes, only settling down after she’d eaten, and often woke her up at four o’clock in the morning.

“After she was born, things were not much different; you always knew what she wanted, or what she didn’t want!

“Hettie made the most of her days, ensuring that we didn’t miss a moment with her by making sure someone was always holding her, and should we try to put her down, she would quickly let us know that she had other ideas; she used to raise her arm in the air anytime we weren’t up to scratch, as if she were calling out to a referee.

“In the evenings she would be fascinated by the coloured lights from her projector, and loved watching the patterns move across the ceiling and walls, whilst listening to us sing nursery rhymes to her, ‘Twinkle Twinkle Little Star’ was her favourite.

“She remained a night owl, and was normally awake in the early hours of the morning, usually chatting along with ‘naught Nanny’ who used to change the words of her nursery rhymes, and make her do the Can-Can instead of her regular ‘baby yoga’ leg exercises.

“Hettie loved all conversation, and frequently joined in by making an ‘Eh-oh’ sound, similar to of the name of the Winnie the Pooh character ‘Eeyore’, and repeating it over and over again.

“It would probably be fair to say that the only thing Hettie loved as much as being at the centre of things was food! She soon worked out the feeding schedule; every two hours both day and night, and would wake for it right on time!

“She was very quick to let us know when she was hungry, opening her mouth wide like a little bird and shaking her head from side to side, and we were in no doubt if we were taking too long about it!

“Although she was fed predominantly through her feeding tube, she loved having her dummy dipped in milk, or sucking drops of milk from a feeding syringe, and soon settled down once we’d obliged.

“Hettie was a delightful character and had a beautiful personality; she was strong-willed yet contented, stubborn yet accepting, and a little bit cheeky too.

“Although she had a lot to contend with in her short life, she handled it with grace, determination and a strength of spirit many adults spend a lifetime hoping to achieve.

“Not only did Hettie show all who knew her that she was ‘compatible with life’, but that she was full of life.

“She radiated life and love, and despite her short time on this earth, was determined to make her mark on this world.

“She challenged preconceptions and exceeded expectations, showing us that all life is precious, and that given the opportunity, people can do amazing things. She was, without doubt, the strongest person we have ever met.

“Hettie – our beautiful girl and precious gift, we are so proud of who you are and all of your amazing achievements. You will forever be in our hearts, minds and spirits, inspiring us to live our lives to the fullest, and helping us to make this world a better place, as you did for us. We love you, be at peace.”

• John and Marie Rayson have set up a Just Giving page which aims to raise funds to buy lie flat car seats for Worcestershire Royal Hospital – https://www.justgiving.com/crowdfunding/inspired-by-hettie

• Edwards' syndrome, also known as trisomy 18, is a rare but serious condition. Edwards' syndrome affects how long a baby may survive. Sadly, most babies with Edwards' syndrome will die before or shortly after being born.