Pride of Britain: Mum who lost daughter at 26 days old reaches £1million charity milestone

• Katie Mainwaring has been shortlisted for ITV News Anglia's Regional Fundraiser of the Year Award. Sophie Wiggins went to meet Mrs Mainwaring at one of the summer fun days she puts on for the families she supports.

A mother whose daughter died at 26 days old is funding support for tens of thousands of families across the country in similar positions.

Katie Mainwaring, from Milton Keynes, says she wants parents to know they "don't have to go through that heartbreaking pain alone".

The charity, 'Emily's Star', is named after Mrs Mainwaring's daughter Emily. It was created in April 2012, a week after Emily's funeral.

It gives support to families whose babies are premature, have complex needs or life-limiting conditions.

“It’s just so important because I was so lonely in a room full of people," said Mrs Mainwaring.

"I was never on my own when Emily was here, everyone was always there, but I’d never felt so alone. 

"It’s a real privilege to do the job that I do, to meet the people that I’ve met, to support those that I’ve supported, and just being able to say to a mum or a dad, 'it’s okay.'"

Mrs Mainwaring's efforts have seen her nominated for ITV Anglia's Regional Fundraiser of the Year Award for the Pride of Britain Awards.

In 2012, Emily was born premature and rushed to the neonatal unit.

The next day, she was diagnosed with a condition called Trisomy 18, also known as Edward's Syndrome - a genetic disorder which can cause many problems, including heart defects.

Mrs Mainwaring says at the time she did not know much about the condition, but her world was soon turned upside down when she was told Emily may only survive for four days.

Mrs Mainwaring and her husband, Ben, took Emily home from the hospital and Mrs Mainwaring says they tried to do normal things.

"We got her christened at home with all of our friends and family, we read stories, went on walks, had cuddles, all of those normal things really."

Emily died at home at 26 days old.

“She gave us 22 days more than we were told we were going to get," said Mrs Mainwaring.

"I mean it is indescribable, the feeling, having part of you not here. It’s the wrong way round, you are meant to go before your children. Not your children before you." 

Since them, Mrs Mainwaring has dedicated her life to helping other families with face-to-face and online support.

“Katie has supported our family so hugely," said Tammy Jones.

"My son, Blake, had Trisomy 18 too. He passed away just before I was 6 months pregnant, and I went through a really traumatic birth with him, I ended up in intensive care.

"When I woke up in intensive care, Katie was right next to my bedside, having only known us a few months. She was the support of our family, and still is today with my daughter Rose, who is autistic."

'Emily's Star' also provides support to the neonatal unit at Milton Keynes Hospital by providing baby boxes for mothers of premature babies.

The boxes include clothing for the baby, toiletries for mum and other items. Around 45-60 of the boxes get shipped out to other neonatal units around the country too.

This year, the charity as a whole also reached a fundraising milestone of one million pounds thanks to all of its supporters.

"To think 12 years on we've helped more than 10,000 people and raised a million pounds as a charity, it's incredible," said Mrs Mainwaring.

"I feel proud for everything that I've achieved in Emily's name and am grateful for everyone that has supported the charity to get us here."

When asked what it would mean to win the Regional Fundraiser of the Year Award, Mrs Mainwaring said: “It would be mind blowing to be honest."

"I feel very very privileged and honoured to have been nominated. To be a finalist is just incredible. To win it? That would pretty much be the ultimate thing for her wouldn’t it, I'd do it for Emily.”

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know...