Four year old Effie inspires campaign to save stamps to find a cure for a rare disease
- Credit: Archant
A couple have set up used stamp collection boxes around the Fens to raise funds to find a cure for a rare terminal disease which has seen their four year old daughter go downhill rapidly in less than a year.
Effie Hadman was a bubbly little girl running around having fun until the age of two and a half when she suddenly developed seizures.
She became forgetful and clumsy and eventually lost the ability to walk and talk.
In the last month she has gone downhill still further when she contracted tonsillitis which set off more seizures and left her unable to sit up or swallow which means she is being fed through a stomach tube.
Batten Disease is caused by a genetic fault, which means the child is deficient in an enzyme which removes waste from the brain. The waste builds up and brain cells die.
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Children lose all of their abilities, need frequent suctioning and become completely blind, demented and bedridden.
Her mum Carly said: “Effie was a bright, bubbly girl until for no apparent reason she suddenly forgot all of her numbers, colours and people’s names due to mental regression. She started suffering seizures.
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“This time last year 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.”
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.
Mrs Hadman said: “We are living on our savings and on the never ending and fantastic support of our parents. I have no idea how we cope or how anyone copes with an ill child. You just do because you have to. It is a day at a time.”
In the meantime they have dropped stamp collection boxes in Barclays Bank branches in Whittlesey, March and Chatteris and in Jones Butcher, Sir harry Smith Community College and Inspirational Cards in Whittlesey in a bid to trade used stamps for cash for the Battens Disease Family Association.
In November the family enjoyed a trip of a lifetime to Disneyland Paris, thanks to a charity called Magic Moments.
“Effie loves the sensation of moving and loved going on all the fast rides. It was amazing for us to get away as a family and make the most of the time we have left together,” Mrs Hadman said.
“We can’t thank Magic Moments enough. George is still young and unlikely to remember the fun times he’s had with his big sister. We would like him to be able to see what a truly amazing, brave and fun loving sister he has.”
Visit their Facebook page at Effie’s Battle With Battens Disease.