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The Brown family, Tony, Lori, Daniel, and Cashen, have been recently devastated by the news that their oldest son Daniel has the rare, fatal genetic disease called Batten or CLN2. Batten disease has no cure and no available treatments at this time.
Batten disease causes a build up of waste products within the body's cells that would normally be disposed of. In turn, the waste products cause progressive neurological impairment including seizures, vision changes/loss, loss of motor skills including walking, talking, and communicating, dementia, and a significantly shortened lifespan.
Daniel is just about 5 years old with a life expectancy of anywhere from 6 - 12 years of age, the average being approximately 8 years old. They reside in Alberta, where Daniel was born, but are hoping to make the move back to Newfoundland to be closer to family at this time. Daniel's dad, Tony, has been out of work due to a downturn in the economy for the better part of the past year, so they will need help in order to make this happen. Daniel also requires medical devices and aides, such as a walker, wheelchair, special chair, among other things, that they will need to return upon leaving Alberta and replace once they arrive in Newfoundland as these items are provincially funded. Down the road, Daniel will need things such as a wheelchair accessible van with a lift, among other modifications to their family home when they become situated.
There are also possibilities of treatments that exist in the US in a clinical trial setting that could potentially slow the progression of the disease, although Daniel is quite progressed already. The Brown family would need to cover costs to travel to the treatment location, again, this is just a possibility at this time. We are hoping to hear that one of these treatments may become available to him very soon but there is no specific timeline, as it's all testing and research based, and also depends on Daniel's health and ability to travel when something becomes available.
With your generous donations we believe we can help give them a good start. Please help bring Daniel and his family home to their family. Thank you from the bottom of our hearts.
© 2016 Microsoft
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English (United States)
Batten disease causes a build up of waste products within the body's cells that would normally be disposed of. In turn, the waste products cause progressive neurological impairment including seizures, vision changes/loss, loss of motor skills including walking, talking, and communicating, dementia, and a significantly shortened lifespan.
Daniel is just about 5 years old with a life expectancy of anywhere from 6 - 12 years of age, the average being approximately 8 years old. They reside in Alberta, where Daniel was born, but are hoping to make the move back to Newfoundland to be closer to family at this time. Daniel's dad, Tony, has been out of work due to a downturn in the economy for the better part of the past year, so they will need help in order to make this happen. Daniel also requires medical devices and aides, such as a walker, wheelchair, special chair, among other things, that they will need to return upon leaving Alberta and replace once they arrive in Newfoundland as these items are provincially funded. Down the road, Daniel will need things such as a wheelchair accessible van with a lift, among other modifications to their family home when they become situated.
There are also possibilities of treatments that exist in the US in a clinical trial setting that could potentially slow the progression of the disease, although Daniel is quite progressed already. The Brown family would need to cover costs to travel to the treatment location, again, this is just a possibility at this time. We are hoping to hear that one of these treatments may become available to him very soon but there is no specific timeline, as it's all testing and research based, and also depends on Daniel's health and ability to travel when something becomes available.
With your generous donations we believe we can help give them a good start. Please help bring Daniel and his family home to their family. Thank you from the bottom of our hearts.
© 2016 Microsoft
Terms
Privacy & cookies
Developers
English (United States)