Leila’s story

Little Leila Willmott had a smile and spirit that made the world a better place, according to proud mum Ellie. The six-year-old died five years ago this month, on 13th July 2018.

She was born with a variety of heart-related defects and spent the first eight months of her life in London’s Royal Brompton Hospital, including five in the intensive care unit, after being diagnosed with CHARGE Syndrome.

It affected many parts of her body, including her breathing, sight and hearing, and she had a tracheostomy fitted when three months old.

Leila had heart surgery twice – once at three months and again when she was two – but defied the odds by being discharged and allowed home in July 2012.

Despite her health complications, she continued to thrive and the family were referred to EACH, going on to spend precious time at The Treehouse.

“I can’t say enough about the care and support we received there,” said mum Ellie (Adams), who lives in Colchester.

“That was definitely the case before she died and also afterwards. They reached out to me at a time when I was shutting everyone out.

“It was a lifeline and one thing that stands out is being given a memory box filled with all the beautiful things Leila made at The Treehouse.

“It was packed and an amazing thing to receive.”

Ellie, Leila and big brother Cameron, now 15, attended various events, including sibling days, and benefitted from short-break care.

They are still in close contact with the charity and Ellie attended a bereaved parents’ coffee morning in May.

“I try to live my life with Leila’s spirit,” said the 32-year-old, who also has a three-year-old daughter, Mia.

“She didn’t have an easy six years and because everything was so complicated I couldn’t take her out or on holiday. Even so, she was always happy and had the most beautiful smile.

“She taught me so much and if everyone was the same as her, the world would be a far better place. I’d been advised to terminate the pregnancy when Leila’s heart problems were detected during my 20-week scan.

“However, I’m so glad I didn’t and have no regrets whatsoever. Leila had the power to make people smile and we had six wonderful years together. I wish there had been more but I’ll forever be grateful.

“Very sadly, children with CHARGE Syndrome often don’t reach their first birthday. If they live past that, they often die before the age of five.

“Leila lived until she was six so defied the odds and showed such bravery – a real fighting spirit. I was also told she’d never walk or be able to hold or grip her toys. On both counts, she managed both things. She was very, very special.”

Leila loved bright lights and was a particular fan of the sensory room, at The Treehouse.

“She was a brilliant character with a fun, quirky sense of humour and it was impossible to be cross with her,” said Ellie.

“She loved hats and I remember one day when she cheekily took the chef’s one off her head at The Treehouse. It was a lovely, funny moment.”

In 2017, Leila was diagnosed with Supraventricular Tachycardia (SVT) – a condition where the heart suddenly beats much faster than normal.

“She was doing well at that point and they were considering taking her tracheostomy out,” said Ellie.

“On the night she died she had come home from school and went to bed completely normally. However, it turned out to be the last time I’d tuck her in and say goodnight.

“A couple of hours later, a carer shouted down to say Leila was unresponsive and she was rushed to Colchester Hospital.”

Leila, who attended Lexden Springs School, died in hospital on 13th July 2018. Ellie said: “I fell apart and still haven’t put my life back together. I don’t think I ever will.

“Part of me died when Leila did, as though she took a part of me with her. We talk about her all the time and Mia is starting to ask questions about her big sister. We often point to a star in the sky and blow kisses.

“All I can say is that I can’t imagine going through the last few years without EACH. It’s an incredible organisation and I feel such a connection.

“The Treehouse is a place where I know she’ll never be forgotten and it’s so reassuring to know that help and support is just a phone call away.

“She was a complete breath of fresh air. She made our home and lives much richer and happier and I miss her every day.

“That will never change and I’d love it if everyone lived like Leila, eating cake, wearing silly hats and laughing lots, because life is too short.”

Published in July 2023

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

She was a complete breath of fresh air. She made our home and lives much richer and happier and I miss her every day.

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