Becca's NY Brain Scan
Donation protected
Hello everyone…. This is one of the hardest things I’ve ever had to do in my life.
If you are reading this, there is a good chance you know my beautiful, kind, loving daughter Rebecca Seiler.
But what a lot of you don't know is her daily struggle that she has been facing for the past 7 years or more, and makes her feel so very unlike who she is.
For the last decade, Becca has been declining in health. This is not necessarily a great conversation starter, so you'd be forgiven for not knowing the severity of this issue. Becca is also a warrior, and takes these things on with great strength. But the fact of the matter is, this is getting to the point where we have to do the hardest of things - ask for help.
Years ago, Becca was diagnosed with something called a Chiari Malformation. We suspect this was caused by an injury to her neck she suffered when she was younger. This is a condition in which brain matter extends into the spinal canal - if this makes it sound like your brain is leaking out of your skull, then... well yes - it is.
The consequences of this are not small. It causes pressure to build up in the intracranial space thousands of times that of normal. This has a wide range of effects, including muscle pain, problems with coordination, vision problems, skin crawling and burning, headaches, nausea, depression, and the most physically shocking, pressure building up behind the eyes causing her eyes to bulge. It’s so severe that during her weekly adjustment, her eyes literally sink back into their sockets. As you might imagine, this all has a massive effect on quality of living. Witnessing your daughter struggling to even maintain friendships, much less have the active lifestyle she so identifies with, breaks our hearts. Her father and I wish we could take pain from her on to ourselves, and would do anything to be able to do so.
Unfortunately, there is not a dependable treatment for this. Brain surgery is an option, but around 20% of the time, it can makes things worse, or offer little to no change. For a major surgery, this is an alarming rate.
However, with regular adjustments, this condition was treated enough that further aggressive options were relegated to the back burner.
Since the Chiari diagnosis, it has slowly become apparent that there is more at work here. The Chiari, though clearly present on brain scans, didn't fully explain everything. And things were getting worse, and worse...
So, there were more trips to more doctors. Years of visits and tests and dead ends have led us consistently back to one thing - the brain. That there is, in fact, more happening there than we can see.
Essentially, what we found was this - that Becca's hormone production, secretion, and overall function was severely depressed, to the point of hardly being registrable. As I'm sure most of you know, if your body is basically making zero hormones, your body is barely functioning. Added to the Chiari, it amazes me that Becca is still standing, much less leading anything even resembling what we take so for granted - a day-to-day life.
The last 7 years have all lead to this - a woman who is so strong, and so brave, that very few people know that most of her day is spent curled up in a ball in immense pain. This is a woman who hasn't felt like herself for almost half her life. And enough is enough.
Time and again we are directed to a single, best option - a full color, three dimensional, full brain scan in Albany, NY. This is Becca's BEST chance for improvement. It will show if there is a tumor, and where - in ways conventional MRI's cannot. It will also illuminate the interplay between any potential tumors, impact injuries, or just faulty anatomy overall, and her Chiari. This needs to happen for her to have a chance at the life she wants and most definitely deserves.
It also happens to cost $10,000.
So again, this is why we're here. Because Becca would never do this herself. Because she gives, and never takes. So I'm asking for her. Knowing this test is out there for Becca that would change her life for the better, and it's a matter of money that's the problem, just makes us feel helpless for our own baby girl. It kills her dad and I to not be able to hand that money over to help her, facing our own adversity over this past year. I can’t even tell you how heartbroken that makes us feel. So I’m reaching out to all my friends, family, and coworkers and anyone out there who can help out at all. Obviously, this is a massive amount of money. But you would be surprised how much every little bit helps. If it's $10 or $20 it still leads down the path of Becca finally living - instead of just surviving. To give my daughter a chance for a normal life. Before we have to go the more invasive route and risk her life in surgery. Before irreversible neurological diseases develop….we really need this test done. With your contributions we can make it happen and get Becca back to the healthy girl who was so extremely active and full of life. I just want my Becca Boo to feel better.
Thank you for reading this and I hope you find it in your heart to donate. God bless you all.
Amy Seiler
If you are reading this, there is a good chance you know my beautiful, kind, loving daughter Rebecca Seiler.
But what a lot of you don't know is her daily struggle that she has been facing for the past 7 years or more, and makes her feel so very unlike who she is.
For the last decade, Becca has been declining in health. This is not necessarily a great conversation starter, so you'd be forgiven for not knowing the severity of this issue. Becca is also a warrior, and takes these things on with great strength. But the fact of the matter is, this is getting to the point where we have to do the hardest of things - ask for help.
Years ago, Becca was diagnosed with something called a Chiari Malformation. We suspect this was caused by an injury to her neck she suffered when she was younger. This is a condition in which brain matter extends into the spinal canal - if this makes it sound like your brain is leaking out of your skull, then... well yes - it is.
The consequences of this are not small. It causes pressure to build up in the intracranial space thousands of times that of normal. This has a wide range of effects, including muscle pain, problems with coordination, vision problems, skin crawling and burning, headaches, nausea, depression, and the most physically shocking, pressure building up behind the eyes causing her eyes to bulge. It’s so severe that during her weekly adjustment, her eyes literally sink back into their sockets. As you might imagine, this all has a massive effect on quality of living. Witnessing your daughter struggling to even maintain friendships, much less have the active lifestyle she so identifies with, breaks our hearts. Her father and I wish we could take pain from her on to ourselves, and would do anything to be able to do so.
Unfortunately, there is not a dependable treatment for this. Brain surgery is an option, but around 20% of the time, it can makes things worse, or offer little to no change. For a major surgery, this is an alarming rate.
However, with regular adjustments, this condition was treated enough that further aggressive options were relegated to the back burner.
Since the Chiari diagnosis, it has slowly become apparent that there is more at work here. The Chiari, though clearly present on brain scans, didn't fully explain everything. And things were getting worse, and worse...
So, there were more trips to more doctors. Years of visits and tests and dead ends have led us consistently back to one thing - the brain. That there is, in fact, more happening there than we can see.
Essentially, what we found was this - that Becca's hormone production, secretion, and overall function was severely depressed, to the point of hardly being registrable. As I'm sure most of you know, if your body is basically making zero hormones, your body is barely functioning. Added to the Chiari, it amazes me that Becca is still standing, much less leading anything even resembling what we take so for granted - a day-to-day life.
The last 7 years have all lead to this - a woman who is so strong, and so brave, that very few people know that most of her day is spent curled up in a ball in immense pain. This is a woman who hasn't felt like herself for almost half her life. And enough is enough.
Time and again we are directed to a single, best option - a full color, three dimensional, full brain scan in Albany, NY. This is Becca's BEST chance for improvement. It will show if there is a tumor, and where - in ways conventional MRI's cannot. It will also illuminate the interplay between any potential tumors, impact injuries, or just faulty anatomy overall, and her Chiari. This needs to happen for her to have a chance at the life she wants and most definitely deserves.
It also happens to cost $10,000.
So again, this is why we're here. Because Becca would never do this herself. Because she gives, and never takes. So I'm asking for her. Knowing this test is out there for Becca that would change her life for the better, and it's a matter of money that's the problem, just makes us feel helpless for our own baby girl. It kills her dad and I to not be able to hand that money over to help her, facing our own adversity over this past year. I can’t even tell you how heartbroken that makes us feel. So I’m reaching out to all my friends, family, and coworkers and anyone out there who can help out at all. Obviously, this is a massive amount of money. But you would be surprised how much every little bit helps. If it's $10 or $20 it still leads down the path of Becca finally living - instead of just surviving. To give my daughter a chance for a normal life. Before we have to go the more invasive route and risk her life in surgery. Before irreversible neurological diseases develop….we really need this test done. With your contributions we can make it happen and get Becca back to the healthy girl who was so extremely active and full of life. I just want my Becca Boo to feel better.
Thank you for reading this and I hope you find it in your heart to donate. God bless you all.
Amy Seiler
Organizer and beneficiary
Amy Martin Seiler
Organizer
Rebecca Seiler
Beneficiary
