Adam's MND Fund
Donation protected
In January 2017, my wonderful husband Adam was diagnosed with Motor Neurones Disease (MND). He is just 42 years old and we have three wonderful children, Sophie, aged 12, Amber, aged 9 and Francis, aged 6.
MND is a rare, rapidly progressive illness that affects 2 in 100,000 people in the UK every year. It damages the nervous system leading to weakness, muscle wasting, severe disability and death. The victim is unable to move, speak, swallow and eventually unable to breath. Death usually occurs within 2-5 years after diagnosis, but half of those affected die within 14 months. MND is a heartbreaking illness for the victims and their families. MND is called ALS in most other countries, it's why some of you got very cold and wet a few years ago, taking part in the Ice Bucket Challenge!
Over the past few months we've been gradually coming to terms with what lays ahead, telling our family and friends, more recently the children, that broke our hearts. We began making new plans for the future and the best of the time left we have together.
Then out of the blue, a new drug Radicut was approved for MND in the US, the first new drug for the disease in 22 years. It won't cure MND, but in trials it has shown to slow it down by 30% and when you've only been given 2 to 5 years that's a real hope. It's most effective in the first two years, so it's perfect for Adam as he's only 9 months in, but it's not licensed in the U.K and the likely cost in the US will be $145,000.
However, we've found another way which will dramatically reduce the cost and not keep Adam away from his home and family, for too long a period.
I'm fundraising now for the £30,000 needed to pay for Adam to have the first two weeks treatment intravenously in either Serbia or Japan, where it's already been used for two years. We'll then be able to purchase a years worth of the medication, which can be administered by a private nurse in the UK, at home with his family around him.
The other option is for the whole family to go to Japan or the US for the treatment but the expense and the disruption to the family is huge.
We've managed together to raise £2000 to put towards the treatment from our savings, but we also need to find the money, or help, for adaptations to our home to make sure he is able to stay at home independently.
There's a chance that Adam won't be able to see his children into adulthood, but with your help it might just be possible, slowing down the disease with a hope for a cure in the future. Please help us raise this money as quickly possible, time is not our friend with the disease continuing to progress.
Eve
MND is a rare, rapidly progressive illness that affects 2 in 100,000 people in the UK every year. It damages the nervous system leading to weakness, muscle wasting, severe disability and death. The victim is unable to move, speak, swallow and eventually unable to breath. Death usually occurs within 2-5 years after diagnosis, but half of those affected die within 14 months. MND is a heartbreaking illness for the victims and their families. MND is called ALS in most other countries, it's why some of you got very cold and wet a few years ago, taking part in the Ice Bucket Challenge!
Over the past few months we've been gradually coming to terms with what lays ahead, telling our family and friends, more recently the children, that broke our hearts. We began making new plans for the future and the best of the time left we have together.
Then out of the blue, a new drug Radicut was approved for MND in the US, the first new drug for the disease in 22 years. It won't cure MND, but in trials it has shown to slow it down by 30% and when you've only been given 2 to 5 years that's a real hope. It's most effective in the first two years, so it's perfect for Adam as he's only 9 months in, but it's not licensed in the U.K and the likely cost in the US will be $145,000.
However, we've found another way which will dramatically reduce the cost and not keep Adam away from his home and family, for too long a period.
I'm fundraising now for the £30,000 needed to pay for Adam to have the first two weeks treatment intravenously in either Serbia or Japan, where it's already been used for two years. We'll then be able to purchase a years worth of the medication, which can be administered by a private nurse in the UK, at home with his family around him.
The other option is for the whole family to go to Japan or the US for the treatment but the expense and the disruption to the family is huge.
We've managed together to raise £2000 to put towards the treatment from our savings, but we also need to find the money, or help, for adaptations to our home to make sure he is able to stay at home independently.
There's a chance that Adam won't be able to see his children into adulthood, but with your help it might just be possible, slowing down the disease with a hope for a cure in the future. Please help us raise this money as quickly possible, time is not our friend with the disease continuing to progress.
Eve
Organizer and beneficiary
Eve Qureshi
Organizer
Adam Qureshi
Beneficiary
