Colchester mum remembers daughter, who died aged six

Even though Leila Willmott has been gone for five years, her mother, Ellie Adams, said she will be forever grateful for the six wonderful years they had together. 

Leila was born with a variety of heart-related defects and spent the first eight months of her life in London’s Royal Brompton Hospital. She was later diagnosed with CHARGE Syndrome, which affected many parts of her body, including her breathing, sight and hearing. 

She had a tracheostomy fitted when she was just three months old and heart surgery twice, once at three months and again at age two. 

Ellie said that she will be forever grateful for the six wonderful years she had with Leila. Image: EACH (Image: EACH)

Leila attended Lexden Springs School in Colchester. Image: EACH (Image: EACH)

Despite this, Leila defied the odds and was discharged and allowed home in July 2012. The family were referred to East Anglia’s Children’s Hospice (EACH), and spent precious time together at The Treehouse in Ipswich. Leila loved bright lights and was a particular fan of the sensory room. 

“Leila taught me so much, and if everyone was the same as her, the world would be a far better place,” said Ellie, 32. 

“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.” 

When Leila’s heart problems were detected during her mother’s 20-week scan, she was advised to terminate the pregnancy. She refused, and said she has “no regrets whatsoever” about that decision. 

“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,” she said. 

“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.” 

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Ellie said that her daughter could be cheeky, and had a quirky sense of humour. Image: EACH (Image: EACH)

Leila and her family spent many happy times together at EACH's Treehouse in EACH. Image: EACH (Image: EACH)

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

These times would become precious memories.  

“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.” 

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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, who also has a three-year-old daughter, Mia. 

“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 died in hospital on July 13, 2018. 

“We talk about her all the time,” said Ellie. “Mia is starting to ask questions about her big sister. We often point to a star in the sky and blow kisses. 

“She made our home and lives much richer and happier, and I miss her every day. 

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

Ellie said she couldn’t imagine how she would have got through the past five years without the support of EACH. 

“It’s an incredible organisation and I feel such a connection,” she said. 

 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.”