Help Erin Stay Zebra Strong!
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Thanks for taking the time to read Erin's story!
Before becoming a professional photographer, Erin put herself through college and earned her BFA in Photography from Oregon State University. At the age of 27, she graduated with honors in 2009. Determined to make a difference in the world, Erin's dream was to teach photography to children while working as a portrait photographer. She has donated her time and photographic services on multiple occasions to charities such as Christian Family Adoptions, Chintimini Wildlife Refuge, and several local animal shelters.
Always the first to help others, it is now Erin who is in need of help.
After nearly two decades of trying to find a reason and a cure for her constant, chronic pain, Erin had major surgery to reconstruct her ab muscles in December 2010. It was a surgery that would quickly lead to the diagnosis of Ehlers-Danlos Syndrome (EDS). An incurable genetic syndrome, EDS affects the collagen in every organ and system in the body. As such, Erin struggles with extreme hypermobility, daily joint dislocations, and widespread chronic pain.
Determined to "fight like a zebra" (the EDS mascot), Erin refused to let the diagnosis get the best of her. She accepted a 'dream job' offer as the press and fine art photographer for one of the largest school districts in the U.S.—a job which required that she relocate to Arizona.
Within a year, Erin had been co-producer and photographer for a TV commercial, as well as directing a short film for PBS. One of her favorite shoots was when she got to photograph and spend the afternoon with Jeff Bridges (a total horse nut, Erin loves the movie "Seabiscuit"). Her photography was also featured in a permanent, solo gallery and on the cover of major newspapers and magazines.
Almost one year after accepting the job, Erin's health took a devastating turn for the worse. She was no longer able to push through the pain, and the results of an MRI on her spine were serious and alarming. Erin returned home to Oregon in late 2013. Since that time, despite aggressive physical therapy and the help of multiple specialists, her health continues to decline. She has been completely unable to work in almost two years. Erin is currently working with an advocate to get approved for SSDI/permanent disability.
Upon returning from Arizona, Erin also found out that she has Mast Cell Activation Disorder (MCAD), which is an auto-immune disorder, and dysautonomia/POTS, which affects all of her autonomic functions (heart rate, blood pressure, body temperature). The disorders are severe enough to make even small tasks, such a taking a shower, very difficult.
In addition to the above, it was discovered that Erin has a compromised immune system. Her IgA should be between 40-600; Erin's IgA is 17. She takes antibiotics on a permanent, daily basis. Without them, her body is now unable to fight off even minor infections.
Recently, after multiple attempts to avoid major surgery, it was determined that Erin will need a spinal fusion of L4-L6. She will then need a 2nd surgery on her brain/neck to help stabilize her c-spine. Without these surgeries, something like a minor car accident could be fatal or paralyzing. Depending upon how her body recovers from these two surgeries, she may also need an additional fusion to repair another area of spinal collapse/bulging disks/spondylosis and facet changes at the lower c-spine. A 4th surgery to address her SI degeneration will be determined at a later date.
Erin is blessed to have a wonderful family, a supportive group of friends, and an amazing boyfriend, but the scope of assistance she'll need throughout these surgeries is overwhelming. Erin has exhausted all of the money she had in savings to pay for daily expenses and medical bills. Gathering info from her 14+ specialists has made applying for disability a long and difficult process, and she is looking at another 2+ months before possible approval. For now, she has had to rely on limited assistance in the form of food stamps and government health care. If you can help donate anything at all to help lessen Erin's financial burden so she can focus on healing, I know that it would help her tremendously.
Any donations received will be used for the following:
* Two months of food for her two dogs and pet skunk. Unfortunately, having EDS so severely has meant that Erin cannot have children, but her three furry companions are her surrogate kids. Knowing that they have plenty of food while Erin will be unable to shop is important. Her boyfriend will be caring for the animals to keep their lives as normal as possible, and Erin would like to pre-make food bags that will be ready to mix and serve, and thus make meal time as low-stress as possible for Steve. To purchase that amount of food in advance will cost ~$200-$300.
* Funds to replace lost wages so Steve can take time off of work when needed. Steve will be one of Erin's main caretakers. She would like to know that he won't have to stress about paying bills should he need to take a few days off to help while she is unable to be home without assistance.
* An adjustable bed. To avoid trying to fit a hospital bed in the living room, and to help her over the long-term, Erin's doctor has urged her to invest in an adjustable bed before her surgery. We would love to make that happen for her.
* Unexpected expenses, medical equipment, and supplies. We don't have an estimate as to how long Erin's recoveries will be. EDS makes surgeries especially complicated, and in the past, Erin has had some serious complications. Knowing that there is a reserve fund to pay for prescriptions, medical equipment, and bills should her recovery be longer than expected would help with the stress of these surgeries.
Thank you for taking the time to read Erin's story! We will continue to update this page with news about surgery dates, post-op info, etc. Your kindness and generosity will make the following months flow as smoothly and comfortably as possible. :)
Before becoming a professional photographer, Erin put herself through college and earned her BFA in Photography from Oregon State University. At the age of 27, she graduated with honors in 2009. Determined to make a difference in the world, Erin's dream was to teach photography to children while working as a portrait photographer. She has donated her time and photographic services on multiple occasions to charities such as Christian Family Adoptions, Chintimini Wildlife Refuge, and several local animal shelters.
Always the first to help others, it is now Erin who is in need of help.
After nearly two decades of trying to find a reason and a cure for her constant, chronic pain, Erin had major surgery to reconstruct her ab muscles in December 2010. It was a surgery that would quickly lead to the diagnosis of Ehlers-Danlos Syndrome (EDS). An incurable genetic syndrome, EDS affects the collagen in every organ and system in the body. As such, Erin struggles with extreme hypermobility, daily joint dislocations, and widespread chronic pain.
Determined to "fight like a zebra" (the EDS mascot), Erin refused to let the diagnosis get the best of her. She accepted a 'dream job' offer as the press and fine art photographer for one of the largest school districts in the U.S.—a job which required that she relocate to Arizona.
Within a year, Erin had been co-producer and photographer for a TV commercial, as well as directing a short film for PBS. One of her favorite shoots was when she got to photograph and spend the afternoon with Jeff Bridges (a total horse nut, Erin loves the movie "Seabiscuit"). Her photography was also featured in a permanent, solo gallery and on the cover of major newspapers and magazines.
Almost one year after accepting the job, Erin's health took a devastating turn for the worse. She was no longer able to push through the pain, and the results of an MRI on her spine were serious and alarming. Erin returned home to Oregon in late 2013. Since that time, despite aggressive physical therapy and the help of multiple specialists, her health continues to decline. She has been completely unable to work in almost two years. Erin is currently working with an advocate to get approved for SSDI/permanent disability.
Upon returning from Arizona, Erin also found out that she has Mast Cell Activation Disorder (MCAD), which is an auto-immune disorder, and dysautonomia/POTS, which affects all of her autonomic functions (heart rate, blood pressure, body temperature). The disorders are severe enough to make even small tasks, such a taking a shower, very difficult.
In addition to the above, it was discovered that Erin has a compromised immune system. Her IgA should be between 40-600; Erin's IgA is 17. She takes antibiotics on a permanent, daily basis. Without them, her body is now unable to fight off even minor infections.
Recently, after multiple attempts to avoid major surgery, it was determined that Erin will need a spinal fusion of L4-L6. She will then need a 2nd surgery on her brain/neck to help stabilize her c-spine. Without these surgeries, something like a minor car accident could be fatal or paralyzing. Depending upon how her body recovers from these two surgeries, she may also need an additional fusion to repair another area of spinal collapse/bulging disks/spondylosis and facet changes at the lower c-spine. A 4th surgery to address her SI degeneration will be determined at a later date.
Erin is blessed to have a wonderful family, a supportive group of friends, and an amazing boyfriend, but the scope of assistance she'll need throughout these surgeries is overwhelming. Erin has exhausted all of the money she had in savings to pay for daily expenses and medical bills. Gathering info from her 14+ specialists has made applying for disability a long and difficult process, and she is looking at another 2+ months before possible approval. For now, she has had to rely on limited assistance in the form of food stamps and government health care. If you can help donate anything at all to help lessen Erin's financial burden so she can focus on healing, I know that it would help her tremendously.
Any donations received will be used for the following:
* Two months of food for her two dogs and pet skunk. Unfortunately, having EDS so severely has meant that Erin cannot have children, but her three furry companions are her surrogate kids. Knowing that they have plenty of food while Erin will be unable to shop is important. Her boyfriend will be caring for the animals to keep their lives as normal as possible, and Erin would like to pre-make food bags that will be ready to mix and serve, and thus make meal time as low-stress as possible for Steve. To purchase that amount of food in advance will cost ~$200-$300.
* Funds to replace lost wages so Steve can take time off of work when needed. Steve will be one of Erin's main caretakers. She would like to know that he won't have to stress about paying bills should he need to take a few days off to help while she is unable to be home without assistance.
* An adjustable bed. To avoid trying to fit a hospital bed in the living room, and to help her over the long-term, Erin's doctor has urged her to invest in an adjustable bed before her surgery. We would love to make that happen for her.
* Unexpected expenses, medical equipment, and supplies. We don't have an estimate as to how long Erin's recoveries will be. EDS makes surgeries especially complicated, and in the past, Erin has had some serious complications. Knowing that there is a reserve fund to pay for prescriptions, medical equipment, and bills should her recovery be longer than expected would help with the stress of these surgeries.
Thank you for taking the time to read Erin's story! We will continue to update this page with news about surgery dates, post-op info, etc. Your kindness and generosity will make the following months flow as smoothly and comfortably as possible. :)
Organizer
Erin O'Shea
Organizer
Salem, OR
