Rare condition that has taken girl’s first words
A LITTLE girl whose rare condition has stripped her of her first precious words is facing a fight against time to stop it taking her life.
Florence Croce’s family were devastated when the three year old was diagnosed with the rare genetic condition, GM1, at the end of last year.
As a regressive condition it has already stopped her development in its tracks.
She can no longer say her first words of ‘mama’ and ‘Cardo’ for big brother Riccardo, she struggles to get around and will eventually lose her ability to walk, talk and swallow.
Her parents, Jenny and Domenico, have been told she’s unlikely to live past the age of 10 and are now pinning their hopes on Florence being accepted for clinical trials in America.
Jenny, 39, said: “Until she was 18 months she was developing normally, she’d taken a few steps, but she wasn’t moving forward and her development really slowed down. It wasn’t until November that we got the diagnosis and they told us that at the moment there is no cure.
“There are different forms of the condition and Florence’s isn’t the most aggressive kind but we have been told she could live until around the age of 10.”
Jenny, from Stalybridge, says she doesn’t know of any other cases of GM1 in the UK, a condition that affects just one in 100,000 to 200,000 newborns.
She added: “It was horrendous to start with, just horrible. We’ve started to come to terms with it and want to make the best possible life for her with nice holidays and the best experiences.
“But we’ve not given up that they could find a cure and we’re fundraising in case she does get accepted onto trials.”
Florence’s parents have also had to explain the situation to her older brother Riccardo, six. Jenny said: “He doesn’t know a lot but we’ve told him she’s special and a bit different to other children and isn’t able to walk and talk.”
Friends of the Croces own Salvi’s restaurant in The Corn Exchange, Manchester.
They have added their own special Florence Pizza to the menu, with all profits going to Florence’s JustGiving page, which aims to raise £10,000 to ensure that Florence and her family can travel to the USA and hopefully take part in this trial next year.
Salvi’s Maurizio Cecco said: “We were devastated when we found out the news. We want to do everything we can to ensure that more people know about this condition and most importantly, help Florence have a happy childhood.”
“We’ll have more going on over the next few months, including a fundraising event at Salvi’s so anything people can do to help would be fantastic.”
To donate, visit: www.justgiving. com/crowdfunding/jenny-croce-1