Local mum continues quest to cure daughter’s rare condition
Tuesday 6th November 2018 @ 16:06 by Tom Greggan
Community Dukinfield News Stalybridge Tameside

A local mum has spoken of her hope that there may one day be a cure to her daughter’s degenerative condition.

Jenny Croce’s daughter, Florence, suffers from Late Infantile Gangliosidosis – or GM1 – a disorder that progressively destroys nerve cells in the brain and spinal chord.

Since her diagnosis almost two years ago, Jenny and her friends and family have fundraised tirelessly for the Cure GM1 Foundation, a non-profit organisation dedicated to finding a treatment and cure for the condition.

Earlier this month, Jenny travelled to Irvine, California, for the GM1 symposium, which gives GM1 families the chance to meet up and speak to researchers and professionals working towards a cure.

Jenny got the chance to meet other GM1 families at the symposium in Irvine, California.

Jenny says the overriding emotion since the symposium has been hope. “It was absolutely amazing,” she said. “I got to meet about ten different families from all over the world; from Malta, Italy, the Philippines etc.

“We heard from researchers and doctors and there are actually three potential clinical trials that could happen next year. One of them could be international so there is real potential that one could be in the UK. I’d go to the Moon to help Florence but to have it more accessible would be amazing.

Florence with her older brother Riccardo.

“Nothing is definite but it is within reach. There has never been this much hope in GM1.”

Jenny had spoken to many of the families she met in California on Facebook, where a large GM1 community connects.

Jenny said: “The families are so passionate; it’s a massive community. Facebook has been amazing for bringing us altogether. I felt like I knew these people before I’d even met them. We have a real connection because they know what you’re going through. You know they’ve got as much fight in their heart as you to cure these children.”

Florence was diagnosed with GM1 aged two-and-a-half, with Jenny told her daughter wouldn’t live past the age of ten. But Florence is making remarkable progress, thanks to Jenny’s alternative treatments and the help of Florence’s school, Oakdale.

“Oakdale is an amazing school,” Jenny said. “She started there last September, so she did her nursery year there and now she’s in Reception. They’ve really pushed her. I’ve asked them to forget Florence’s diagnosis, to push her and to give her the best chance she’s got. They’ve actually brought her on. She’s doing more than they thought she’d be able to do and she’s smashed three out of four of her targets.”

Fundraising for Florence and the Cure GM1 Foundation continues apace, with Jenny, Florence and Florence’s older brother Riccardo receiving support from local organisations such as Reuben’s Retreat and the Church of the Nazarene.

Last Monday, a special superhero sponsored walk was held to raise more funds for Florence, with young supporters donning their superhero gear and walking around Stamford Park in Stalybridge.

A superhero walk in Stalybridge raised vital funds for the Cure GM1 Foundation.

You can follow their story on Facebook at www.facebook.com/fundraisingforflorence. For more information on GM1 and the fight for a cure, visit curegm1.org.