A Kempston woman who has raised thousands for Keech Hospice after her little sister died from a rare ageing condition has been shortlisted for a Pride of Britain award.
Lucy Tobutt’s sister Fleur died in 2003 at just two-years-old of progeria, a rare genetic condition which causes children to age rapidly. Lucy has been fundraising in her name ever since.
As reported by ITV Anglia News, Fluer was the youngest child in the world to be diagnosed with the condition and was looked after by Keech Hospice in Luton before she died.
Lucy has since been fundraised for her whole life in Fleur’s memory, which has lead her to be shortlisted for ITV Anglia’s 2023 Regional Fundraiser of the Year Pride of Britain award.
Fleur’s diagnoses and story were even featured in a 2002 TV documentary when Lucy was only six. It was watched by four million people on the night it aired and broadcast in 14 countries.
Talking about Fleur, Lucy told ITV News Anglia, “She was very cheeky, very, very cheeky. She was just the most loving, caring little sister. And I would do anything to have her here now with me.”
On what would have been Fleur’s 21st birthday, Miss Tobutt organised a ball with west end singers, street dance acts, raffles, speeches and more for 300 guests.
It raised £51,000, almost three times as much as her target.
Keech Hospice
“It made me feel like me and Fleur were together by me holding this ball,” said Lucy. “Her name was everywhere, and so was her picture, she would have loved it.”
“It made me feel like I have my sister back, and so it was very special. It was very hard, but it was worth it 100% to raise a lot of money for Keech.”
Her parents Mark and Becky Tobutt told ITV News Anglia how proud they were of their daughter for organising the ball.
Mr Tobutt, who is a retired Bedfordshire Police detective chief superintendent, said: “It was a joyous evening.
“It was a significant day in our life, I felt so as a father, and I think Becky felt the same. An evening that was just totally about our two daughters.
“I must admit, when I turned up, I had a lump in my throat, an emotional thing to walk in to say that Lucy on her own had organised.”
Becky added: “I am so proud. So, so proud. I could shout from the rooftop how proud I am of Lucy.”
Keech Hospice, is one of the few places to provide support for end-of-life care for children, from the first day of diagnosis up until their 18th birthday.
They help children from across Bedfordshire and also Hertfordshire and Milton Keynes.
Speaking to ITV Anglia News about Lucy’s fundraising, Nikki Samsa from the hospice said: “Without people like Lucy, we couldn’t keep caring for patients.
“I think Lucy’s phenomenal. She’s not going to get any benefit from the fundraising she’s done. But that much money could pay for a nurse at the hospice for a whole year.
“It’s an incredible amount that she raised, and it’s genuinely going to make a massive difference to so many families in the future.”
Upon being nominated for a Pride of Britain award, Miss Tobutt said she was happy that it would help get Keech Hospice’s name recognised.
“What Keech Hospice Care does deserves to get shouted about,” she said.
“All those families and their children they help. They deserve every moment of their name to be recognised.”
Miss Tobutt says she hopes to continue fundraising so that other children get the support Fleur did at the hospice.
The Pride of Britain awards will be shown on ITV in October.
