Anita's Transverse Myelitis Recovery
Donation protected
06/04/2018 Update: As some of you may know by now, my beautiful wife Anita, was 18 weeks pregnant with our son, Van, last summer. June 14th was the last day she was ever able to walk. This came very suddenly after she complained of having excruciating back pain and started to have numbness in her lower extremities. After a 4 AM trip to the hospital, our minds were blown as they diagnosed her with a form of Transverse Myelitis.
We later came to understand the route cause of this in March of 2018 after visiting one of the top Spinal Cord Specialists, Dr. Carlos Pardo at Johns Hopkins. Anita had suffered from a very damaging, non-traumatic spinal cord injury known as a Spinal Cord Infarction or in lamens terms, a Spinal Cord Stroke.
This has been a very trying time for us as we've seeked out every single form of recovery and rehabilitation but with the extensivness of her injury, just about all cards are off the table. There is some hope that with the continuing developments in Stem Cell therapy that she could again walk one day. In the meantime, we are going to try to make her life as comfortable and as accessible as possible.
The next items on the list to help her include the following...
-Carbon Black System Carbon Fiber Lightweight Wheelchair. Anita's current wheelchair weighs approximately 39 lbs which makes it very difficult for her to move around with ease. The new Carbon Black System chair weighs in at just 15 lbs. making it a complete game changer for her getting around much better.
-We were going to install a home elevator but after looking at the construction time and phenomenal cost, we've since decided to build a one-level home in our existing neighborhood. The downside is that the cost of construction has gone way up which will hinder our monthly expenses but it is necessary in order to help break down the barriers that we've encountered.
-Stem Cell Therapy: Recently, scientists have discovered a specific stem cell therapy in which the use of your own fat cells can have the ability to regenerate any tissue in the body, including individuals with spinal cord injuries. Spinal cord injury (SCI) is a devastating trauma causing long-lasting disability.
Although advances have occurred in the last decade in the medical, surgical and rehabilitative treatments of SCI, the therapeutic approaches are still not ideal. The use of cell transplantation as a therapeutic strategy for the treatment of SCI is promising, particularly since it can target cell replacement, neuroprotection and regeneration. Cell therapies for treating SCI are limited due to several translational roadblocks, including ethical and practical concerns regarding cell sources.
The use of iPSCs has been particularly attractive, since they avoid the ethical and moral concerns that surround other stem cells. Furthermore, various cell types with potential for application in the treatment of SCI can be created from autologous sources using iPSCs. For applications in SCI, the iPSCs can be differentiated into neural precursor cells, neurons, oligodendrocytes, astrocytes, neural crest cells and mesenchymal stromal cells that can act by replacing lost cells or providing environmental support.
Some methods, such as direct reprogramming, are being investigated to reduce tumorigenicity and improve reprogramming efficiencies, which have been some of the issues surrounding the use of iPSCs clinically to date. Recently, iPSCs have entered clinical trials for use in age-related macular degeneration, further supporting their promise for translation in other conditions, including SCI.
Below, you will see some of the updates along the way and some of the avenues we've tried to make work but at the end of the day, there is currently nothing that exists that will help her regrow her damaged spinal cord unless we can access a clinic that can treat with iPSC.
We thank everyone for all the continued support and donations. It helps more than you could ever imagine!
04/13/2018 Update: After two weeks at the Kennedy Krieger Center, Anita is finally back home here in Atlanta. She will continue her Physical Therapy at Shepherd Center here and will be going back to Baltimore once every six months.
We've tried to come up with different solutions to either make her quality of life better, or find a specific way to maybe get her mobile again. After being rejected from the Stem Cell Institute in Panama, I did more research to find another facility that would accept her and came across something that I think we will be 100% on doing.
https://epiduralstimulationnow.com is a Medical Institute in Bankok, Thailand that offers a medical breakthrough solution for patients with spinal cord injuries. Their solution is to surgically implant a device that allows communication from the brain to the spinal cord below the line of injury, thus bridging the gap.
They then supplement this with stem cell therapy and an aggressive 30-40 day in-patient physical therapy program and the result have been dramatic. This will truly allow Anita to have the building blocks to one day walk again. Logistically and financially, this is very challenging. After thouroughly looking at everything, this specific trip to allow her this treatment will be about $100,000.00. It is my mission to get her walking again and this seems like the most viable solution for her to take back her life.
Update: After consulting with Anita's neurologist, due to the severity of her spinal cord injury, the Epidural Stimulation was not a viable option.
03/05/2018 Update: After making the journey to Baltimore, MD to see world renown spinal cord doctor, Dr. Carlos Pardo at Johns Hopkins, it was determined that Anita has suffered from a Spinal Cord Stroke or what's known in the medical world as a Spinal Infarction. This was believed to have occured due to a blood clot. We know that her condition will not worsen and are working on a path to improve her overall quality of life and are hopeful to eventually have her mobile again one day with the help of future medical technologies.
We will be heading back up to Baltimore during the first two weeks of April for Anita to go through a comprehensive and technologically advanced physical therapy program at the Kennedy Krieger Center. We have many goals that we are trying to acheive at the moment and some larger, life changing, solutions that will hopefully put her back into some normalcy sooner than later which include the following...
-Stem Cell Therapy at the Cell Medicine Stem Cell Insitute in Panama with Dr. Riordan. Dr. Riordan has been able to successfully restore neurological function in the majority of his pateints by using a specific stem cell derived from the umbilical cord called MSC's. For more information, please visit their website: https://www.cellmedicine.com
-Home modifications including a Vacuum Elevator that is wheelchair accessible and a master bathroom remodel that will allow Anita to become more independant.
-Continuous Physical Therapy at Shepherd Center here in Atlanta, GA
10/18/2017 Update: My first day back to work, I got a frightening call from Anita's mother, who's been her primary caretaker at the house in complete shock. I got Anita on the phone briefly and found that her neck had excruciating pain. I'm so lost and don't know what to do but this Transverse Myelitis diagnosis from Emory seems far from over. I'm working with some great friends to try and get her accepted to UAB, one of only a few TM Specialty Centers in the world. I'll keep everyone updated but this disease has yet to go into remission and is progressively getting worse.
10/13/2017 Update: Anita was readmitted to the hospital about 1 week ago to Northside Cherokee after a reoccurrence of back pain. She was then transported 5 days later to Emory to figure out was has caused her these issues. After spending a few days here they have ran numerous tests, given her multiple scans, MRI's, MRA's you name it. They have us some pretty devastating news and have told us that due to the severity and length of time she's been exposed to this spinal inflammation, that her spinal cord has actually shrunk, damaging the nerves beyond repair. Her chance to walk again has been medically referred to as no longer an option in her recovery. They are still working on what has actually occurred and are calling it idiopathic. I've decided to reopen her GoFundMe account as we are simply trying to stay afloat with expenses. I've been out of work and been by her side throughout all of this. Our goal is to make Anita's life moving forward as easy and as comfortable as possible. I will have to make numerous modification to our house above and beyond what we've already performed and will likely have to take quite a bit more time off from work in the near future. Many of you have asked how you can help and this is probably the easiest way to do so. Thank you!!!
My beautiful, caring wife, Anita, our unborn Son and myself are going through a very trying time right now. Tuesday, June 14th Anita woke up at 4:30 in the morning to excruciating back pain and numbness to her lower body. I immediately rushed her to the hospital and after two MRI's and numerous tests, it was initially determined that she is suffered from a rare spine disease similar to multiple sclerosis called Transverse Myelitis.
After spending 3 weeks at Northside Hospital here in Atlanta, she was then transferred over to the Shepherd Center where she spent 7 week with their inpatient program. There, the neurologist that was working her case noticed after several more MRI's that her inflammation was not going down and that there was blood showing on her spinal cord. It was then determined that she has suffered from something much worse. Anita has been dianosed with a rare spinal entity referred to as a Spinal Dural Arteriovenous Fistula (SDAVF/DAVF)
A Spinal Dural Arteriovenous Fistula (SDAVF/DAVF) typically starts out as an irregular blood vessel located deep inside the spinal cord that someone has typically lived with all their life. For Anita's case, her pregnancy has likely exposed it, causing it to swell, hemmerage, produce extreme inflammation and as a result has left her paralysed from upper abdomen down.
Even after many rounds of steroids and aggressive rehabilitation, she is still unable to move her legs or use the bathroom on her own. Her recovery has become complicated due to her being pregnant and unable to get the much needed angiogram and surgery required to fix it. Our main concern is to help her heal quickly and that the health of the baby is perfect. I'm a fairly successful guy but a serious medical condition like this is not only physically damaging, but also mentally and financially. I've already sold one of my vehicles and numerous other assets in order to keep up with medical expenses. I've been very grateful for all of the donations thus far but it may not be nearly enough to cover the months to come.
I initially debated on whether or not to even do this as I'm not a taking a hand out type of guy but a good friend of mine suggested we should definitely reach out to our community to help even if it's just 1%. We are very grateful for all the prayers, kind words, and everything else. Words cannot describe all of the thanks we have for all of the moral support.
"Any help would be greatly appreciated. God bless!
We later came to understand the route cause of this in March of 2018 after visiting one of the top Spinal Cord Specialists, Dr. Carlos Pardo at Johns Hopkins. Anita had suffered from a very damaging, non-traumatic spinal cord injury known as a Spinal Cord Infarction or in lamens terms, a Spinal Cord Stroke.
This has been a very trying time for us as we've seeked out every single form of recovery and rehabilitation but with the extensivness of her injury, just about all cards are off the table. There is some hope that with the continuing developments in Stem Cell therapy that she could again walk one day. In the meantime, we are going to try to make her life as comfortable and as accessible as possible.
The next items on the list to help her include the following...
-Carbon Black System Carbon Fiber Lightweight Wheelchair. Anita's current wheelchair weighs approximately 39 lbs which makes it very difficult for her to move around with ease. The new Carbon Black System chair weighs in at just 15 lbs. making it a complete game changer for her getting around much better.
-We were going to install a home elevator but after looking at the construction time and phenomenal cost, we've since decided to build a one-level home in our existing neighborhood. The downside is that the cost of construction has gone way up which will hinder our monthly expenses but it is necessary in order to help break down the barriers that we've encountered.
-Stem Cell Therapy: Recently, scientists have discovered a specific stem cell therapy in which the use of your own fat cells can have the ability to regenerate any tissue in the body, including individuals with spinal cord injuries. Spinal cord injury (SCI) is a devastating trauma causing long-lasting disability.
Although advances have occurred in the last decade in the medical, surgical and rehabilitative treatments of SCI, the therapeutic approaches are still not ideal. The use of cell transplantation as a therapeutic strategy for the treatment of SCI is promising, particularly since it can target cell replacement, neuroprotection and regeneration. Cell therapies for treating SCI are limited due to several translational roadblocks, including ethical and practical concerns regarding cell sources.
The use of iPSCs has been particularly attractive, since they avoid the ethical and moral concerns that surround other stem cells. Furthermore, various cell types with potential for application in the treatment of SCI can be created from autologous sources using iPSCs. For applications in SCI, the iPSCs can be differentiated into neural precursor cells, neurons, oligodendrocytes, astrocytes, neural crest cells and mesenchymal stromal cells that can act by replacing lost cells or providing environmental support.
Some methods, such as direct reprogramming, are being investigated to reduce tumorigenicity and improve reprogramming efficiencies, which have been some of the issues surrounding the use of iPSCs clinically to date. Recently, iPSCs have entered clinical trials for use in age-related macular degeneration, further supporting their promise for translation in other conditions, including SCI.
Below, you will see some of the updates along the way and some of the avenues we've tried to make work but at the end of the day, there is currently nothing that exists that will help her regrow her damaged spinal cord unless we can access a clinic that can treat with iPSC.
We thank everyone for all the continued support and donations. It helps more than you could ever imagine!
04/13/2018 Update: After two weeks at the Kennedy Krieger Center, Anita is finally back home here in Atlanta. She will continue her Physical Therapy at Shepherd Center here and will be going back to Baltimore once every six months.
We've tried to come up with different solutions to either make her quality of life better, or find a specific way to maybe get her mobile again. After being rejected from the Stem Cell Institute in Panama, I did more research to find another facility that would accept her and came across something that I think we will be 100% on doing.
https://epiduralstimulationnow.com is a Medical Institute in Bankok, Thailand that offers a medical breakthrough solution for patients with spinal cord injuries. Their solution is to surgically implant a device that allows communication from the brain to the spinal cord below the line of injury, thus bridging the gap.
They then supplement this with stem cell therapy and an aggressive 30-40 day in-patient physical therapy program and the result have been dramatic. This will truly allow Anita to have the building blocks to one day walk again. Logistically and financially, this is very challenging. After thouroughly looking at everything, this specific trip to allow her this treatment will be about $100,000.00. It is my mission to get her walking again and this seems like the most viable solution for her to take back her life.
Update: After consulting with Anita's neurologist, due to the severity of her spinal cord injury, the Epidural Stimulation was not a viable option.
03/05/2018 Update: After making the journey to Baltimore, MD to see world renown spinal cord doctor, Dr. Carlos Pardo at Johns Hopkins, it was determined that Anita has suffered from a Spinal Cord Stroke or what's known in the medical world as a Spinal Infarction. This was believed to have occured due to a blood clot. We know that her condition will not worsen and are working on a path to improve her overall quality of life and are hopeful to eventually have her mobile again one day with the help of future medical technologies.
We will be heading back up to Baltimore during the first two weeks of April for Anita to go through a comprehensive and technologically advanced physical therapy program at the Kennedy Krieger Center. We have many goals that we are trying to acheive at the moment and some larger, life changing, solutions that will hopefully put her back into some normalcy sooner than later which include the following...
-Stem Cell Therapy at the Cell Medicine Stem Cell Insitute in Panama with Dr. Riordan. Dr. Riordan has been able to successfully restore neurological function in the majority of his pateints by using a specific stem cell derived from the umbilical cord called MSC's. For more information, please visit their website: https://www.cellmedicine.com
-Home modifications including a Vacuum Elevator that is wheelchair accessible and a master bathroom remodel that will allow Anita to become more independant.
-Continuous Physical Therapy at Shepherd Center here in Atlanta, GA
10/18/2017 Update: My first day back to work, I got a frightening call from Anita's mother, who's been her primary caretaker at the house in complete shock. I got Anita on the phone briefly and found that her neck had excruciating pain. I'm so lost and don't know what to do but this Transverse Myelitis diagnosis from Emory seems far from over. I'm working with some great friends to try and get her accepted to UAB, one of only a few TM Specialty Centers in the world. I'll keep everyone updated but this disease has yet to go into remission and is progressively getting worse.
10/13/2017 Update: Anita was readmitted to the hospital about 1 week ago to Northside Cherokee after a reoccurrence of back pain. She was then transported 5 days later to Emory to figure out was has caused her these issues. After spending a few days here they have ran numerous tests, given her multiple scans, MRI's, MRA's you name it. They have us some pretty devastating news and have told us that due to the severity and length of time she's been exposed to this spinal inflammation, that her spinal cord has actually shrunk, damaging the nerves beyond repair. Her chance to walk again has been medically referred to as no longer an option in her recovery. They are still working on what has actually occurred and are calling it idiopathic. I've decided to reopen her GoFundMe account as we are simply trying to stay afloat with expenses. I've been out of work and been by her side throughout all of this. Our goal is to make Anita's life moving forward as easy and as comfortable as possible. I will have to make numerous modification to our house above and beyond what we've already performed and will likely have to take quite a bit more time off from work in the near future. Many of you have asked how you can help and this is probably the easiest way to do so. Thank you!!!
My beautiful, caring wife, Anita, our unborn Son and myself are going through a very trying time right now. Tuesday, June 14th Anita woke up at 4:30 in the morning to excruciating back pain and numbness to her lower body. I immediately rushed her to the hospital and after two MRI's and numerous tests, it was initially determined that she is suffered from a rare spine disease similar to multiple sclerosis called Transverse Myelitis.
After spending 3 weeks at Northside Hospital here in Atlanta, she was then transferred over to the Shepherd Center where she spent 7 week with their inpatient program. There, the neurologist that was working her case noticed after several more MRI's that her inflammation was not going down and that there was blood showing on her spinal cord. It was then determined that she has suffered from something much worse. Anita has been dianosed with a rare spinal entity referred to as a Spinal Dural Arteriovenous Fistula (SDAVF/DAVF)
A Spinal Dural Arteriovenous Fistula (SDAVF/DAVF) typically starts out as an irregular blood vessel located deep inside the spinal cord that someone has typically lived with all their life. For Anita's case, her pregnancy has likely exposed it, causing it to swell, hemmerage, produce extreme inflammation and as a result has left her paralysed from upper abdomen down.
Even after many rounds of steroids and aggressive rehabilitation, she is still unable to move her legs or use the bathroom on her own. Her recovery has become complicated due to her being pregnant and unable to get the much needed angiogram and surgery required to fix it. Our main concern is to help her heal quickly and that the health of the baby is perfect. I'm a fairly successful guy but a serious medical condition like this is not only physically damaging, but also mentally and financially. I've already sold one of my vehicles and numerous other assets in order to keep up with medical expenses. I've been very grateful for all of the donations thus far but it may not be nearly enough to cover the months to come.
I initially debated on whether or not to even do this as I'm not a taking a hand out type of guy but a good friend of mine suggested we should definitely reach out to our community to help even if it's just 1%. We are very grateful for all the prayers, kind words, and everything else. Words cannot describe all of the thanks we have for all of the moral support.
"Any help would be greatly appreciated. God bless!
Organizer
Grant Van Brewer
Organizer
Canton, GA
