My wife, Rachel, needs a craniocervical fusion and Chiari decompression surgery. Without this surgery, she experiences extreme pain and disability, and risks sudden death due to stroke, aneurysm, apnea, or as the result of any single whiplash injury.
Rachel’s skull slides back and forth out of place on her spine by 8 millimeters (a safe maximum is 1 mm), damaging her brainstem, arteries, and nerves. Her cerebellum is blocking the flow of cerebrospinal fluid (CSF) at the base of her skull, dangerously increasing the pressure in her brain. She has temporarily been put in a hard cervical collar to prevent further damage and alleviate symptoms, until surgery can be performed.
We need help raising money for her surgery and associated travel expenses. The surgery is (re-re)scheduled for July 11, 2017, at Doctors Community Hospital in Lanham, MD.
Rachel’s brain and spine issues are caused by a rare, genetic connective tissue disorder called hypermobile Ehlers-Danlos Syndrome (hEDS). Surgery is much more complicated and risky in the EDS population, and specialized knowledge is required to ensure a successful or even safe outcome. There are no EDS-knowledgeable surgeons in our home state of Alabama or even in neighboring states. Dr. Fraser Henderson is the expert in Rachel’s condition, and he is the surgeon we have chosen to trust with her life.
If you would like to know more, you can view a video of Dr. Henderson speaking about her condition (craniocervical instability), associated symptoms, and treatment here:
Some of you know Rachel, but for those of you who do not, I’d like to tell you a little bit about her. Rachel is a dedicated mother and wife. She loves her family deeply and fiercely. When she was still able, she took care of our home and two little boys, all while working as a tech support specialist from home. She was active in our church, giving of time, money, and herself. She coordinated Vacation Bible School for the Dalraida church of Christ for many years. She often volunteered at the children’s school (Redland Elementary School in Wetumpka, AL), teaching art projects or decorating classroom doors.
In her work, Rachel seldom took a day off despite her suffering. She could often be seen working mobile in doctors' waiting rooms, even going so far as to take a work call while being put under sedation for a painful procedure. As a talented artist, Rachel was a founding and active member of the South Alabama Fiber Enthusiasts (SAFE) Guild and a consistent participant in Montgomery’s Atrium art group. In this capacity, she not only made her own art, but encouraged and promoted the work of her friends in the local art community.
Portrait of Elaine, Rachel Sipper 2016
Since she was diagnosed, Rachel’s health has deteriorated significantly, robbing her of her ability to show her talents and be there for others. However, she still reaches out in any way she can through social media, supporting many who are going through similar pain and loss as a support group member and administrator. Rachel uses her mind and heart to help others in any way possible, continuing to show her beautiful love and compassion. Although Rachel hasn’t been able to draw or paint in some time, she has a website where you can see her most recent work:
Rachel has had a long road in fighting chronic illness. It began about ten years ago, and in that time she has seen dozens of specialists and surgeons. She has collected multiple diagnoses and endured treatment after treatment, experiencing countless prescriptions’ side effects and many painful procedures in an effort to treat an ever-growing cluster of symptoms that have encroached on her ability to live a normal life. Between 2013 and 2014, Rachel had three separate surgeries in pursuit of head and neck pain relief alone.
Eventually, she put together the puzzle herself, discovering that she fit the profile of Ehlers-Danlos Syndrome to a T. She requested a geneticist’s evaluation in 2015, and Dr. Descartes at UAB confirmed that she did indeed have hEDS. By the summer of 2016, Rachel had become homebound and disabled, unable to participate in even the most basic life experiences. She had to stop making art, because looking down at the paper caused blackouts and nausea. Her world has now shrunk to the size of our bedroom; she can’t even tuck our children into bed at night, or wash her own hair without my assistance. She leaves the house only to go to doctor’s appointments, and no longer drives at all.
The decade of doctors’ visits, treatments, and surgeries has cost our family tens of thousands of dollars. Rachel lost her job when she lost the ability to drive. Our high medical costs every month, combined with the loss of Rachel’s job, have caused us extreme financial hardship. We are relying on family and friends to get her the medical help she needs now.
This upcoming brain and spine surgery is the most promising treatment we have found for Rachel’s symptoms. It cannot take away her genetic condition, but it can relieve the worst of its symptoms for her. By stabilizing her spine, decompressing her brainstem, and making room for her CSF to flow freely, Dr. Henderson hopes to restore a great deal of function to Rachel’s life and relieve the incredible pain she has to endure on a daily basis.
We will need an estimated total of $13,516 to get Rachel the surgery she needs and stay in Washington, DC for two weeks. We were hoping to raise about half of that amount here: $6,758.
Unbelievably, we reached that amount in less than one week of fundraising! Thank you all from the bottom of our hearts. Since we planned to keep the GoFundMe up for six weeks (up to the surgery date), we are now going to shoot for the full amount (plus the 8% that goes to GoFundMe). If we make it, we won't have to go into debt borrowing that other half. Again, we are in awe and so very grateful for the generosity we've already been shown!
Below is the breakdown of our cost estimate, so you can see where all the money is intended to go. The children will only be with us in the DC area for one week in order to reduce our costs, accompanied by Rachel's parents since they cannot stay overnight in the hospital with us.
Deposit for Dr. Henderson- $7,326
Estimated durable medical equipment cost- $2,100
Hospital Copays and Rx- $840
Food & Kids’ Lodging- $2,170
Transportation & Incidentals- $1,080
Update: Since GoFundMe charges an 8% fee, we've adjusted our fundraising goal to absorb that charge.
A Note from Rachel
Hi everyone, and thank you so much for taking the time to get to know my story. I understand that not everyone can donate. Even a few dollars can really add up when many people come together, so please consider helping us out with any amount at all. My dearest hope is to get back to any level of "normal" at all, one where I can participate fully in all the beautiful moments life has to offer. I want to play with my children, go out on a date with my husband, participate in my community, and maybe even get back to my passion, making art. I have a stack of canvases, a set of oil paints and brushes, and a brain full of ideas just waiting to be something amazing. Please help me make it happen. Love to you all. -Rachel
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