Sarah's Quest to Beat EDS
Donation protected
Hi! My name is Steve Hargis, and I am from a suburb of St. Louis, MO. My daughter, Sarah, has been fighting a genetic disorder called Ehlers-Danlos Syndrome (EDS) for her entire life. With EDS, the body cannot properly use a protein known as collagen, which is a primary component of connective tissue. Connective tissue exists throughout the body-- in the bones, ligaments, tendons, muscles, organs, blood vessels, and much more. Since Sarah's body cannot use collagen in the correct way, her joints dislocate constantly, she has multiple organ problems including her gut and heart, her immune system doesn't work like it should, and her brain and spinal column are severely affected. In total, Sarah has already had about 30 surgeries to fix all sorts of issues related to EDS in 29 years of life.
EDS is rare, especially the type that Sarah has. It took two decades to get this diagnosis, which was ultimately made by a specialist in New York. In 2017, she ventured to that specialist for an experimental surgery that involved drilling a hole in her head, extracting her skull, and then fusing it back onto the first 3 vertebrae of the spinal column. Sarah was finally able to return to work, attend social events, and enjoy new hobbies again. And there were finally answers about why she was sick and injured so often-- that was incredible!
Now, Sarah has to return to NY for a revision of that surgery-- and that costs a LOT of money. Because she has been out of work due to other complications of EDS, the medical bills just keep piling up. This surgery was unexpected and the symptoms worsened quite suddenly, so no one was prepared to make a trip to NY so soon. Her neurosurgeon has stated that the surgery is now urgent since every day that passes, there is more nerve damage. Essentially, the surgery will involve fusing her entire cervical spine in an effort to keep her herniated disks from pushing into the spinal cord.
Sarah will be on a flight the day after Christmas for an appointment on the 27th. At this point, no one knows how long she will have to stay in NY, especially since EDS causes healing problems and other complications.
Any money that is donated will be used to cover travel costs and medical bills for this trip (including her flight to NY, a hotel room for before and after surgery, and medical bills from the hospital/surgeon/anesthesia). The money donated on GoFundMe will be sent immediately to Sarah's account as she is the one paying the bills for this trip.
She greatly appreciates the love and support she has from her family, friends, and EDS community. Helping her financially will help her stress less about money during the healing process, and concentrate more on getting better!
Thank you!
#ZebraStrong
*Edit*
*Since Sarah has been in NY, she has been to an appointment with the neurosurgeon and a presurgical appointment with the anesthesia team. Her surgery is scheduled for January 9th, and her mom (Beckie) will meet her on January 8th so she can be with Sarah for surgery. With it being a new year, insurance money has started over. She has been informed that the hospital intends to charge her at least $7,900 AFTER insurance, and that doesn't include any copays, anesthesia costs, surgeon charges, or extra days in the hospital. Please refer to the updates we have posted (myself and Sarah) since beginning this campaign in order to learn more about her surgery.*
EDS is rare, especially the type that Sarah has. It took two decades to get this diagnosis, which was ultimately made by a specialist in New York. In 2017, she ventured to that specialist for an experimental surgery that involved drilling a hole in her head, extracting her skull, and then fusing it back onto the first 3 vertebrae of the spinal column. Sarah was finally able to return to work, attend social events, and enjoy new hobbies again. And there were finally answers about why she was sick and injured so often-- that was incredible!
Now, Sarah has to return to NY for a revision of that surgery-- and that costs a LOT of money. Because she has been out of work due to other complications of EDS, the medical bills just keep piling up. This surgery was unexpected and the symptoms worsened quite suddenly, so no one was prepared to make a trip to NY so soon. Her neurosurgeon has stated that the surgery is now urgent since every day that passes, there is more nerve damage. Essentially, the surgery will involve fusing her entire cervical spine in an effort to keep her herniated disks from pushing into the spinal cord.
Sarah will be on a flight the day after Christmas for an appointment on the 27th. At this point, no one knows how long she will have to stay in NY, especially since EDS causes healing problems and other complications.
Any money that is donated will be used to cover travel costs and medical bills for this trip (including her flight to NY, a hotel room for before and after surgery, and medical bills from the hospital/surgeon/anesthesia). The money donated on GoFundMe will be sent immediately to Sarah's account as she is the one paying the bills for this trip.
She greatly appreciates the love and support she has from her family, friends, and EDS community. Helping her financially will help her stress less about money during the healing process, and concentrate more on getting better!
Thank you!
#ZebraStrong
*Edit*
*Since Sarah has been in NY, she has been to an appointment with the neurosurgeon and a presurgical appointment with the anesthesia team. Her surgery is scheduled for January 9th, and her mom (Beckie) will meet her on January 8th so she can be with Sarah for surgery. With it being a new year, insurance money has started over. She has been informed that the hospital intends to charge her at least $7,900 AFTER insurance, and that doesn't include any copays, anesthesia costs, surgeon charges, or extra days in the hospital. Please refer to the updates we have posted (myself and Sarah) since beginning this campaign in order to learn more about her surgery.*
Organizer
Steve Hargis
Organizer
City of Saint Peters, MO