Rare coincidence of incurable juvenile dementia found in two toddlers in the same town
- added July 21, 2008
- 5 responses
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- goldenways
- added this
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Tragically, they are expected to die at any time in the next 10 to 12 years.
However, their tormented parents are now drawing comfort from one another after suddenly discovering they live only a few miles apart in the same UK town.
And their respective children have since become inseparable.
Baby Josh, aged 20 months, and toddler Hollie laugh and play together like normal children, unaware of their ticking timebomb plight.
The two families from Milton Keynes, Buckinghamshire, first heard about each other through a support group.
Hollie's mum, Helen Carter, said that both children had been diagnosed with the junior version of senile dementia after suffering prolonged jaundice at birth.
'They were both taken to King's College Hospital in London after they were born, where the disease was discovered following tests,' she said.
'One of the first symptoms of this is liver disease,' she added.
Soon the children will take part in vital research in America in the hope of providing a lifeline to future generations of Niemann-Pick type C (NPC) victims - the official name for juvenile dementia.
Selfless mothers Helen and Jodie want their offspring to leave a lasting legacy so their short lives won't have been wasted.
They are preparing themselves for the slow nightmare of watching their little ones develop the on-set of the illness.
Firstly, they will start to become clumsy, falling over and their memories will start to fade.
This will be followed by their sudden inability to walk, talk or feed themselves.
And, tragically, when the time comes for them to die, they are unlikely to even recognise their parents.
While the women are powerless to halt the progression of the illness, they are planning to take them to the National Institutes (corr) of Health in Maryland for trials.
Hollie's mother, Helen, aged 32 years, who is married to 39-year-old Pete, said: 'We are trying to raise funds for the trip because we have to do everything possible while there's still a flicker of hope.
***article continues,click link to read***
However, their tormented parents are now drawing comfort from one another after suddenly discovering they live only a few miles apart in the same UK town.
And their respective children have since become inseparable.
Baby Josh, aged 20 months, and toddler Hollie laugh and play together like normal children, unaware of their ticking timebomb plight.
The two families from Milton Keynes, Buckinghamshire, first heard about each other through a support group.
Hollie's mum, Helen Carter, said that both children had been diagnosed with the junior version of senile dementia after suffering prolonged jaundice at birth.
'They were both taken to King's College Hospital in London after they were born, where the disease was discovered following tests,' she said.
'One of the first symptoms of this is liver disease,' she added.
Soon the children will take part in vital research in America in the hope of providing a lifeline to future generations of Niemann-Pick type C (NPC) victims - the official name for juvenile dementia.
Selfless mothers Helen and Jodie want their offspring to leave a lasting legacy so their short lives won't have been wasted.
They are preparing themselves for the slow nightmare of watching their little ones develop the on-set of the illness.
Firstly, they will start to become clumsy, falling over and their memories will start to fade.
This will be followed by their sudden inability to walk, talk or feed themselves.
And, tragically, when the time comes for them to die, they are unlikely to even recognise their parents.
While the women are powerless to halt the progression of the illness, they are planning to take them to the National Institutes (corr) of Health in Maryland for trials.
Hollie's mother, Helen, aged 32 years, who is married to 39-year-old Pete, said: 'We are trying to raise funds for the trip because we have to do everything possible while there's still a flicker of hope.
***article continues,click link to read***
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- goldenways
- 1 month ago
5 responses // Rare coincidence of incurable juvenile dementia found in two toddlers in the same town
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To back the nippers in their journey to America, or for more information, visit hopeforhollie.co.uk
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- goldenways
- 1 month ago
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It never seems to matter until it is one of our own.
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Probably some GMO crop brought to you my Monsanto...
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If I knew I was going to die in 10 years I would live my life to the fullest and do as much good as I can.
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- Eri_Soulja
- 1 month ago
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God Bless these children. The parents have a hard time to come, it's good they have decided to help others it's going to be hard to see their children go thru this.
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