Abby's Chiari Campaign

Dear Friends, Family and every Abby Supporter out there (you know who you are).

On July 25th Abby will have her 10th surgery related to her Chiari Malformation/Ehlers Danlos Syndrome (EDS).  We are asking for help with some of the financial burdens.  Abby and her husband, Matt, will travel to the Chiari Institute in New York for this surgery.  The family needs our help funding the travel to and from New York as well as medical bills for the surgery.

Abby’s Story

Let me first start by saying, there is no way to fit the journey Abby has been on into just a few small paragraphs.  So please set a few minutes aside to learn the cliff’s notes version of Abby’s story.  As I attempted to write this, I am reminded of the strength, determination and hope that come in the tiny little package that I call my sister Abby.

In 2006 during the birth of her youngest daughter, Madi, Abby experienced an epidural leak.  She was treated in the hospital but the headache continued after she and Madi were discharged.  That day began a severe headache and chain of events that have taken over her life.  Imagine a headache so bad it is debilitating, impossible to function in your everyday routine.  This is what Abby has dealt with on a daily basis since 2006, coupled with back pain that has made it impossible for her to be a part of the workforce.  So, she made the choice to stay home, focusing all her energy on raising two AMAZING girls (Emily, 15 and Madison, 11) and finding answers that would hopefully lead to recovery.

Over the next few years, with Matt by her side every step of the way, there were visits to Urgent Care, the ER, chiropractors, neurologists, and specialty clinics. Abby underwent numerous tests, tried multiple medications, and had countless MRIs, scans and ultrasounds.  It was found that she had Carotid Stenosis and Kikuchi Fujimoto lymphadenitis (masses in her lymph node chain).  The neurologist and surgeons worked together on these masses but they kept recurring without reason.  Thinking this may be the cause of the headache, she was then referred to a headache specialist who performed more scans of the brain and found an arterial venous malformation.

In October of 2010 the Ferrel family made the move to Minnesota for three years because the cost of living was less and new medical opportunities were available there.  In 2012, she learned she had a Chiari Malformation, and had since birth.  Chiari is a brain malformation that many are born with and most doctors don’t acknowledge because it is relatively unknown.  At first, when Abby questioned the Chiari, doctors said it was no big deal.  She continued to research and learned it can cause damage to the brainstem, cerebellum, entire length of the spine and nerves as a result of interrupted cerebrospinal fluid flow and the cerebellum falling into the spinal canal.  Her epidural puncture back in 2006 served as a catalyst for all these issues.

After all these years Abby has now been diagnosed with a connective tissue disorder that has been present since birth, Ehlers Danlos Syndrome (EDS), a genetic disorder that affects every connective tissue in the body.  People with EDS cannot properly form collagen, which is the “glue” that holds the body together.  This is what has caused the back pain and problems with scarring that have led to continued severe headaches, even after a back fusion and multiple brain surgeries to correct the Chiari.

So what’s changed???

In May of this year, Abby applied and was accepted to the Chiari Institute in New York, connecting her with the best experts in the field for her conditions.  Within two weeks she had a Skype appointment with Dr. Rekate.  He confirmed her Chiari and EDS syndromes and said the only solution is surgery.  The combination of these diagnoses cause the spine to press on the brainstem and “affect the part of the brain that controls sensory processing and the autonomic nervous system, or, all the body functions you do without thinking.”  As the doctor simply put it, her spine is stabbing her brain and her head is falling off.  What?!?!?!

Matt and Abby will travel to New York on July 23.  Abby will have the surgery on the 25th, remain in the hospital for at least 5 days, and then they will stay at a nearby hotel for at least another 5 days where she will continue to recover until the doctor releases her for the trip back home.  They need our help.  This is an amazing opportunity and gift for Abby, but it comes with large expenses.  We want to help them in any way we can with the expected $10,000 in travel and medical expenses they will incur.

On behalf of all of us – we thank you from the bottom of our hearts for any donation big or small.  Please continue to keep Abby, Matt, Emily and Madison in your thoughts and prayers as they continue on this journey.

Thank you from all of us who love them.

Donations

 See top
  • Anonymous 
    • $30 
    • 27 mos
  • Anonymous 
    • $20 
    • 29 mos
  • Jim Arnold 
    • $50 
    • 30 mos
  • Holly Olson 
    • $50 
    • 30 mos
  • MIchelle Ira Beckman 
    • $50 
    • 30 mos
See all

Organizer and beneficiary

Alexis Beckman 
Organizer
Jordan, MN
Abby Ferrel 
Beneficiary
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