Race to find cure for Florence; Stalybridge toddler battling life-limiting illness
Thursday 9th March 2017 @ 16:07 by Tom Greggan
News Stalybridge

The race is on to find a miracle cure for beautiful little Tameside girl Florence Croce.

The three-year-old has been diagnosed with an extremely rare genetic condition that destroys cells in the brain and spinal cord. It means her development will slowly regress, to the point where she will no longer to be able to walk, talk or swallow.

Tragically, doctors do not expect Florence to live past her tenth birthday.

Florence’s family were devastated when they received the shattering diagnosis last November. She has a condition called Late Infantile Gangliosidosis, or GM1, which affects just one person in 250,000.

But Florence’s mum, Jenny, 39, is holding out hope that one day, medical trials will be available to to give her daughter a lifeline.

Florence strikes a pose for her photography session at Strawberry Angels in Ashton.

“There is hope,” she said. “They’ve found a cure in animals in America. There is a charity called the GM1 Foundation and they are trying to raise money to get human trials underway. Hopefully, this time next year, the trials will go ahead and we’d love for Florence to go. It just depends if she gets picked for them. If we can go, I’d go tomorrow if it meant she could get help.”

In the meantime, Jenny wants to raise as much awareness as possible about GM1, while also fundraising to hopefully one day send Florence to America if the trials go ahead. Fundraising for Florence has reached more than £6,000 since her diagnosis.  A staggering amount of individuals and local companies have got on board to raise thousands of pounds.

Last week, Florence took part in a free, stunning photo shoot at Strawberry Angels in Ashton, just one of many kind gestures sent Florence’s way since her diagnosis. Florence even has a pizza named after her at Salvi’s restaurant in Manchester, with all profits going towards her fund.

Jenny said: “There are a couple of big runs in Manchester that I am doing with friends. Two of my university friends are spending every day in April in fancy dress, going to work in fancy dress!

“We’re going to EuroDisney in three weeks because my friend raised over £1000 walking up Snowden. Lots of charities are helping us out; Reuben’s Retreat have been amazing, Our Kid’s Eyes in Droylsden have been amazing and we’ve been referred to Francis House in Didsbury.

She added: “Tesco in Stalybridge have been really great. They’re doing two lots of bag-packing and two big raffles. They’re also going to do a fun day and support us with any raffles. Florence and Amelia’s have been amazing; they’re donating a big prize to raffle off at Christmas. Five a Day and Mettricks have got charity boxes too.”

Jenny says the support her family has received since their shattering news in November has been overwhelming. “The response since the diagnosis has got me through,” she said. “We fell to pieces when we found out but the support has been been incredible. People have just totally got on board with it and it is overwhelming, it is getting me through.”

Jenny has also been in contact with families in America who are also dealing with GM1, which affects just 1 in 250,000. She said: “I don’t know of anybody else in the UK that has got it, although I’m sure there are. We feel that there is hope that Florence can get help. If she can’t be helped, we want her to have nice holidays and nice experiences and enjoy every single second. We want to put it out there because there must be other families going through this and we want to support them as well as Florence.”

The next fundraiser for Florence is a fashion show at the Church of the Nazarene in Ashton on Saturday 8th April. Tickets cost £10 and can be bought by ringing Kat Wood on 07557344067. All proceeds from the night will go towards Florence’s fund, and you can also donate at www.justgiving.com/crowdfunding/jenny-croce-1.