Scott needs Stem Cells
Donation protected
We need to raise £30,000 for my brother, Scott Everett to have Stem Cell treatment in Moscow to slow down the progression of his Motor Neurone Disease and for him to have a new drug not available on the NHS.
If you did the Ice Bucket Challenge in July/August 2015 and made a donation, you did an amazing thing. You contributed to the much needed research into Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease, or as we know it in the U.K. Motor Neurone Disease (MND). Because of the money raised, many discoveries were made about this neurological degenerative fatal disease, but as yet no permanent cure has been found. This year, the results of many research trials into this disease will be published and everyone is hopeful.
So let me tell you about Scott, he's an HGV driver from Stevenage, who is only 46 years old. He's married to Catherine and they have two beautiful little girls (Anna, 5 years old and Evie, 2 years old).
Scott started having symptoms that were first diagnosed as a sinus infection. Slowly, his symptoms got worse and he found it more difficult to speak clearly. Scott was referred to an ENT consultant at a Lister Hospital for scans; then out of the blue he received a letter from his consultant advising his doctor to refer him to Neurology for investigation into 'possible' Motor Neurone Disease. The distress that letter caused to Scott and the entire family is indescribable and we suddenly found ourselves in a position that we thought only happened to 'other families'.
After many weeks and many tests, on Thursday 16th March 2017, Scott was given the devastating diagnosis of 'Progressive Bulbar Palsy', this is Motor Neurone Disease that starts by affecting the speech and swallowing before spreading to the rest of the body. Life expectancy is approximately 3 years from the moment symptoms start.
The advice given to Scott was to go away and put his affairs in order as basically nothing can be done. The best they could offer is ways to make his life more comfortable whilst his body slowly started to shut down e.g. Taking Riluzole which would buy him a couple of months, fitting a feeding tube into his stomach for when he was no longer able to swallow, breathing aids etc.
We cried, A LOT! So many things changed in an instant, including Scott no longer being able to work as an HGV driver. Then that great saying "If you want something doing, do it yourself" kicked in. We did many weeks of research and talked to others suffering with the same disease, through this we found that people are finding ways to drastically slow down, if not stop their disease from getting worse. Finally, some much needed hope.
This is where we need your help.
We want to get Scott to Swiss Medica who have a clinic in Moscow where he can get Stem Cell treatment and a new drug, 'Radicut'. They have treated other patients with the same condition as Scott, we have talked to each of them and all have reported improvements in their conditions. We need to buy Scott as much time as possible whilst a cure is being found and we are all determined to get him there.
We are arranging fundraising activities to raise the £30,000 needed and we would be so grateful for any donations you are able to give, no matter how small. If you would also support us by sharing our appeal with all your contacts, we'd be so appreciative.
Together, let's help Scott get Stem Cells and have a chance to see his daughters grow up. Thank you xx
If you did the Ice Bucket Challenge in July/August 2015 and made a donation, you did an amazing thing. You contributed to the much needed research into Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease, or as we know it in the U.K. Motor Neurone Disease (MND). Because of the money raised, many discoveries were made about this neurological degenerative fatal disease, but as yet no permanent cure has been found. This year, the results of many research trials into this disease will be published and everyone is hopeful.
So let me tell you about Scott, he's an HGV driver from Stevenage, who is only 46 years old. He's married to Catherine and they have two beautiful little girls (Anna, 5 years old and Evie, 2 years old).
Scott started having symptoms that were first diagnosed as a sinus infection. Slowly, his symptoms got worse and he found it more difficult to speak clearly. Scott was referred to an ENT consultant at a Lister Hospital for scans; then out of the blue he received a letter from his consultant advising his doctor to refer him to Neurology for investigation into 'possible' Motor Neurone Disease. The distress that letter caused to Scott and the entire family is indescribable and we suddenly found ourselves in a position that we thought only happened to 'other families'.
After many weeks and many tests, on Thursday 16th March 2017, Scott was given the devastating diagnosis of 'Progressive Bulbar Palsy', this is Motor Neurone Disease that starts by affecting the speech and swallowing before spreading to the rest of the body. Life expectancy is approximately 3 years from the moment symptoms start.
The advice given to Scott was to go away and put his affairs in order as basically nothing can be done. The best they could offer is ways to make his life more comfortable whilst his body slowly started to shut down e.g. Taking Riluzole which would buy him a couple of months, fitting a feeding tube into his stomach for when he was no longer able to swallow, breathing aids etc.
We cried, A LOT! So many things changed in an instant, including Scott no longer being able to work as an HGV driver. Then that great saying "If you want something doing, do it yourself" kicked in. We did many weeks of research and talked to others suffering with the same disease, through this we found that people are finding ways to drastically slow down, if not stop their disease from getting worse. Finally, some much needed hope.
This is where we need your help.
We want to get Scott to Swiss Medica who have a clinic in Moscow where he can get Stem Cell treatment and a new drug, 'Radicut'. They have treated other patients with the same condition as Scott, we have talked to each of them and all have reported improvements in their conditions. We need to buy Scott as much time as possible whilst a cure is being found and we are all determined to get him there.
We are arranging fundraising activities to raise the £30,000 needed and we would be so grateful for any donations you are able to give, no matter how small. If you would also support us by sharing our appeal with all your contacts, we'd be so appreciative.
Together, let's help Scott get Stem Cells and have a chance to see his daughters grow up. Thank you xx
Organizer
Kerry Everett
Organizer
