Big thanks goes out to everybody who has collected stamps for Effie
- Credit: Archant
Thousands of stamps have poured in after a couple put out an appeal to help collect as many as possible to raise money to find a cure for their daughter’s rare genetic disease.
Carly and Paul Hadman set up stamp collection boxes in banks and shops across the Fens as part of an appeal to raise awareness and funds to find a cure for Late Infantile Batten Disease which their daughter Effie was diagnosed with last year.
Her mum Carly, of Whittlesey, thanked everybody for the response which she said had been amazing.
Effie was a bright, bubbly girl until for no apparent reason she suddenly forgot all of her numbers, colours and people’s names. She then started suffering seizures.
Mrs Hadman said: “We thought she had epilepsy but in January 2014, when Effie was three and a half, we received the devastating news that she has Late Infantile Batten Disease which has a life expectancy of five to 12 years old.”
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Carly and her husband Paul are carriers for the rare disorder. The one ray of light is that their one year old son George does not have the disease - he was six weeks old when they discovered Effie was terminally ill.
On receiving the news the couple sold their home in Leicestershire, gave up their jobs and moved to a bungalow in Whittlesey close to where both sets of parents live.
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Batten disease is a fatal, inherited disorder of the nervous system, in which previously normal children develop vision problems or seizures.
Over time, the children suffer mental impairment, dementia, worsening seizures and progressive loss of sight and motor skills. They may have difficulties sleeping and become distressed for no apparent reason.
They lose their ability to sit and hold their head up, and will eventually need to be tube fed. Eventually, the children become blind, bedridden and demented. “Despite her worsening symptoms, Effie is still a very happy, brave and inspirational little girl who loves music, stories and watching Peppa Pig,” her Mum said.
At the moment, there is no treatment and no cure for Batten disease.