Flories Fund
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Rett Syndrome is a rare neurological disorder affecting mainly females. Although present at birth, it is usually undetected until major regression occurs at around one year of age.
When Florie was born, her parents, Katie and Adam, had no idea that anything was wrong.
Mrs De’Ath, 31, said: “Florie developed as a regular toddler. She could walk, she was babbling. She was hitting all her milestones. We had no concerns at all.
“Then at 16 months she started to change. She was acting really strangely. She was rolling her tongue.
“Then we thought, ‘She’s not babbling any more’.”
In addition, Florie started constantly wringing her hands.
“One of the key symptoms is repetitive hand movements. They tap, some clap, some pull their fingers,” said Florie’s mum.
In desperation, Mrs De’Ath, who used to live in Hoddesdon, Googled “excessive hand wringing” and the Rett UK website came up.
“I knew as soon as I found it online. It was too much of a coincidence,” she said.
A blood test confirmed the diagnosis at 21 months.
Now, at four, Florie is in a wheelchair and is unable to feed herself. Her mum, of High Wych, said: “We don’t know how long we have got Florie for.
“The research now is still going forward, but we don’t know how long that’s going to take. It may not be in Florie’s lifetime.”
Now, Mrs De’Ath and her sister are organising Rett Fest – to be held at the Allenburys Sport and Social Club in Ware on Saturday, July 18. Entry is free, and there will be live music, a children’s entertainer and stalls.
Money will be split between Rett UK, Reverse Rett and Cure Rett.
Mrs De’Ath said: “It’s so rare and it’s not government funded. All the research is funded by parents fundraising. We are hoping for 200 people plus to get through the door.”
Read more at http://www.hertfordshiremercury.co.uk/Rett-Fest-raising-awareness-neurological-syndrome/story-26058716-detail/story.html#kgylG2bFUvgABMBA.99
When Florie was born, her parents, Katie and Adam, had no idea that anything was wrong.
Mrs De’Ath, 31, said: “Florie developed as a regular toddler. She could walk, she was babbling. She was hitting all her milestones. We had no concerns at all.
“Then at 16 months she started to change. She was acting really strangely. She was rolling her tongue.
“Then we thought, ‘She’s not babbling any more’.”
In addition, Florie started constantly wringing her hands.
“One of the key symptoms is repetitive hand movements. They tap, some clap, some pull their fingers,” said Florie’s mum.
In desperation, Mrs De’Ath, who used to live in Hoddesdon, Googled “excessive hand wringing” and the Rett UK website came up.
“I knew as soon as I found it online. It was too much of a coincidence,” she said.
A blood test confirmed the diagnosis at 21 months.
Now, at four, Florie is in a wheelchair and is unable to feed herself. Her mum, of High Wych, said: “We don’t know how long we have got Florie for.
“The research now is still going forward, but we don’t know how long that’s going to take. It may not be in Florie’s lifetime.”
Now, Mrs De’Ath and her sister are organising Rett Fest – to be held at the Allenburys Sport and Social Club in Ware on Saturday, July 18. Entry is free, and there will be live music, a children’s entertainer and stalls.
Money will be split between Rett UK, Reverse Rett and Cure Rett.
Mrs De’Ath said: “It’s so rare and it’s not government funded. All the research is funded by parents fundraising. We are hoping for 200 people plus to get through the door.”
Read more at http://www.hertfordshiremercury.co.uk/Rett-Fest-raising-awareness-neurological-syndrome/story-26058716-detail/story.html#kgylG2bFUvgABMBA.99
Organizer
Shane Yerrell
Organizer
