A young girl from Dukinfield will be pushed around the Simplyhealth Great Manchester Run course as her family continue their fundraising bid to find a cure for her rare genetic disorder.
5-year-old Florence Croce suffers from the regressive condition GM1 Gangliosidosis and won't live past the age of 10.
The disorder damages nerve cells in the brain and spinal cord and after already losing the ability to walk and talk, she will eventually lose the ability to eat and move around.
After her initial diagnosis in 2017, her mum Jenny Croce launched the Fundraising for Florence campaign and has raised in excess of £40,000, with funds going towards the Cure GM1 Foundation, supporting Florence with treatment and equipment and making happy memories for her.
Now, 41-year-old part time sales assistant will run 10k at the Simplyhealth Great Manchester Run for a third year, but this time has recruited a team of 15 people to push Florence around the course in her wheelchair.
They will join thousands of people in Manchester on Sunday 19th May and experience an event like no other in the heart of the city centre, with 10k and half marathon courses known for their buzzing atmosphere and incredible local support.
Jenny, who is hoping to raise a further £1000 by taking part in the Simplyhealth Great Manchester Run, said: “I love this event because of the amazing atmosphere. The support is absolutely incredible right around the course.
“It's very emotional running for Florence but I get my strength from seeing all the people running for such wonderful causes and charities. It's a real honour this year to run with such a great team of people wanting to help Florence.
“Florence has regressed slightly over the last two years. She is no longer able to crawl up stairs and doesn't really pull herself up anymore. But she is doing really well at a special needs school she attends.
“Since Florence's diagnosis we have sent in excess of £10,000 to the Cure GM1 Foundation to support the research and trials.
“I have also moved house and renovated it to make it accessible for Florence. The next big fundraising project will be to make the garden safe and accessible for her.”
Last October Jenny travelled to the GM1 symposium in California where she met with doctors, researchers and other families affected by GM1.
“It was an amazing few days. Currently there are three clinical trials in the pipeline. The first is scheduled for this summer and would be at the National Institute of Health in Maryland, USA. The other two are towards the end of this year.
“Where there is no guarantee Florence will be picked for the trials, she has a really good chance as it's so rare. It's a nail biting time but a very hopeful and exciting time.”