Kelsey's CCI/Chiari Surgical Fund
Donation protected
Before falling ill, Kelsey and her husband loved to travelAn Active Life
Just a few short years ago, Kelsey was an active person working as a full time nanny for several young families, earning her Masters degree as a Reading Specialist, and enjoying vacations with her husband, Jimmy. Kelsey dedicated her free time to helping others by advocating for women with endometriosis, of which Kelsey previously had stage IV. She handcrafted plush kangaroos for women to take with them to surgeries, a portion of the proceeds of which went to fundraisers that helped defray the cost of out of network surgeries.
Starting a Family
After years of infertility, Kelsey and her husband were thrilled to adopt a sibling group of three in 2015. Kelsey was looking forward to being a stay at home mom and literacy tutor. Shortly after settling the children into their new home, Kelsey began to experience neurological symptoms.
At first, the source of the symptoms was unclear. Kelsey had already been diagnosed with a genetic connective tissue disorder called Ehlers Danlos syndrome. EDS affects the collagen in Kelsey's body, especially her ligaments. Kelsey experiences hypermobility in most of the joints in her body, causing them to partially dislocate on a daily basis. It seemed she had experienced a setback in her physical therapy protocol. She was prescribed a neck brace, but continued to try to strengthen her muscles.
A minor car accident involving a drunk driver increased her symptoms in December 2015. She began experiencing daily seizures. Thankfully, her doctors recognized the signs of tethered cord syndrome, a condition of the spinal cord that causes abnormal stretching of the cord, decreased muscle tone, and eventually can lead to paralysis. Kelsey underwent surgery in April 2016 to correct tethered cord syndrome. She felt much better, and made a great deal of progress during recovery. However, the relief she experienced after that surgery only lasted a few months.
Before her neurological symptoms, Kelsey ran an endometriosis awareness website, and handmade stuffed kangaroos. A portion of the sales of the kangaroos went to fundraisers for women seeking surgical care A Diagnosis
In August 2016, Kelsey fainted and hit her head. This was followed by a seizure. She had three more similar episodes within a week. These episodes were replicated during manual manipulations of her neck, and it was thought that slowly progressive exercise would improve symptoms. Over the next six months, Kelsey's tolerance for exercise and movements of the neck decreased, while her neurological symptoms and seizure episodes increased.
Kelsey uses a special pillow to keep her head still while in bed
Bedbound
In early 2017, Kelsey stopped tolerating being upright altogether, and she is now bedbound awaiting surgical intervention. She experiences seizures, fainting episodes, drop attacks, transient paralysis, severe pain in her neck and head, and weakness. At this time, she is not even able to travel to her local doctors without experiencing seizures.
Thanks to an experienced medical team, she has been diagnosed with craniocervical instability and Chiari malformation. Essentially, her genetically defective collagen in her ligaments allows the neck vertebrae to move freely in all directions, causing her neck to collapse on itself. This causes compression on her brain stem. When the brain stem is compressed, she experiences seizures, periods of unconsciousness, and impaired ability to move or speak. This is all worsened by the effects of gravity on the spine.
Kelsey needs complex neurosurgical care to regain her function and quality of life. Her first four vertebrae must be fused to provide stability. At the same time, the neurosurgeon needs to make additional room for the hindbrain to relieve pressure on the brain stem. Kelsey is scheduled for three surgeries over the course of two days in June: invasive traction, upper cervical fusion, and posterior fossa decompression. Because Kelsey has such a difficult time traveling, preoperative testing and the surgeries will be done in one trip. Kelsey will need to travel from Boston to New York and stay in the hospital for several days.
Kelsey looks forward to spending time at the beach with her family after she recovers
Hope for the Future
Kelsey and her family hope that these surgeries will help her become the active wife and mother she once was and had always planned to be. Kelsey also hopes to regain her ability to spend time advocating for women with endometriosis, and giving back to her community.
We are raising funds to cover her 20% coinsurance for three surgeries and hospital stay, as well as 10 days of travel expenses for both Kelsey and Jimmy.
Donor Levels
To show our appreciation, each of our donors will receive a personalized thank you from Kelsey and her family.
Thank you so much for visiting and contributing to the campaign!
Kelsey uses a special pillow to keep her head still while in bedBedbound
In early 2017, Kelsey stopped tolerating being upright altogether, and she is now bedbound awaiting surgical intervention. She experiences seizures, fainting episodes, drop attacks, transient paralysis, severe pain in her neck and head, and weakness. At this time, she is not even able to travel to her local doctors without experiencing seizures.
Thanks to an experienced medical team, she has been diagnosed with craniocervical instability and Chiari malformation. Essentially, her genetically defective collagen in her ligaments allows the neck vertebrae to move freely in all directions, causing her neck to collapse on itself. This causes compression on her brain stem. When the brain stem is compressed, she experiences seizures, periods of unconsciousness, and impaired ability to move or speak. This is all worsened by the effects of gravity on the spine.
Kelsey needs complex neurosurgical care to regain her function and quality of life. Her first four vertebrae must be fused to provide stability. At the same time, the neurosurgeon needs to make additional room for the hindbrain to relieve pressure on the brain stem. Kelsey is scheduled for three surgeries over the course of two days in June: invasive traction, upper cervical fusion, and posterior fossa decompression. Because Kelsey has such a difficult time traveling, preoperative testing and the surgeries will be done in one trip. Kelsey will need to travel from Boston to New York and stay in the hospital for several days.
Kelsey looks forward to spending time at the beach with her family after she recovers Hope for the Future
Kelsey and her family hope that these surgeries will help her become the active wife and mother she once was and had always planned to be. Kelsey also hopes to regain her ability to spend time advocating for women with endometriosis, and giving back to her community.
We are raising funds to cover her 20% coinsurance for three surgeries and hospital stay, as well as 10 days of travel expenses for both Kelsey and Jimmy.
Donor Levels
To show our appreciation, each of our donors will receive a personalized thank you from Kelsey and her family.
Thank you so much for visiting and contributing to the campaign!
Organizer and beneficiary
James Chin
Organizer
Boston, MA
Kelsey Chin
Beneficiary