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Help Zoe get to the Mayo Clinic Pain Rehab Center

"Not all scars show. Not all wounds heal. Not all illness can be seen. Not all pain is obvious. Remember this before passing judgment on another."

OUR STORY:
Zoe has a different story to tell than most 17 year old high school seniors. The last 16 months of her life have been the most difficult journey our entire family has ever experienced. In August of 2017, the beginning of Zoe's junior year, she began having stomach pain and nausea after she ate. We tried the normal treatments but nothing helped.  In October she had a HIDA scan that showed her gallbladder was only functioning at 13%. On November 14, 2017 Zoe underwent a laprascopic cholecystectomy (gallbladder removal). She was told it was a simple surgery and that she would be back in school in 2 weeks or less.  Only that didn't happen. The first couple of weeks home after the surgery were riddled with vomiting and other terrible symptoms. She spent her Thanksgiving doubled over, vomiting and barely able to move.  We were told she was just taking longer to recover than most and would be fine in another week. That week came and went and she was constantly nauseated and had continual stomach pain.  Christmas was much the same as Thanksgiving with her weakness and  symptoms continuing to worsen.   We began a long process of visiting specialists, making trips to the emergency room and more testing than most people have to endure their entire lives. The collection of hospital admission bracelets began to pile up and the scars and bruises on her arms from her IVs were slow to heal. The simple  act of eating and drinking that we all take for granted every day of our lives, became a constant struggle for her. Anything and everything made her symptoms worse.  The pain and nausea were present 24/7 but eating or even drinking water made the pain excruciatingly worse.  Zoe continued to lose weight at a fast pace. 

Our medical journey took us to many cities around the state and included multiple procedures, tests and admissions. Testing confirmed she had gastroparesis (a paralyzed stomach). We tried diets and treatment for that which led to terrible side effects from the medication and offered no relief of symptoms.  Her isolation continued to grow by the day and our hope of finding help diminished. Zoe spent her days feeling frustrated, helpless and alone, dealing with a list of symptoms that is too long to enumerate.

Zoe has been unable to attend school full time since November of 2017.  She began her senior year attending one class in school and 5 classes at home online. Most days she is not well enough to make it into school for that class. She has become extremely deconditioned due to the inability to exercise or be active. She has lost a lot of muscle mass and has lost well over 60 pounds to date! Her weight continues to decline.  This illness has robbed her of her normalcy.  It has stolen her social life and has made her physically weak. Her strength however, continues to amaze me.   Zoe has self-determination, has kept straight As in all her classes, and has big dreams of someday working in the medical field in order to help others struggling with illness.  But she is living a life interrupted. 

DIAGNOSIS:
In September of 2018, we visited the Mayo Clinic in Rochester, MN. All testing was normal including her gastric emptying study which showed she no longer had gastroparesis. That was wonderful news, but the pain and nausea were worse than ever. It was their conclusion that the gallbladder removal was such an insult to her nervous system, that it caused it to dysfunction, leaving her in constant pain and with constant nausea.  This is not an easy diagnosis as there is no magic 'cure'. It is a chronic condition. There are medications that can help 'mask' the pain but so far none of them have been helpful and only cause bad reactions. Most recently Zoe has endured the most difficult weeks to date, suffering very serious and life-threatening side effects from these medications. She seems to have reached her breaking point and something must be done to help her. 

THE PLAN:
Zoe has been accepted into the  Mayo Clinic Pediatric Pain Rehabilitation Center.  It is an intensive 3 1/2 week program that helps teenagers learn to cope and live with chronic pain and illness. There is no surgery and no medication that will 'fix' Zoe, but the PRC will help give Zoe the tools she needs to function on a daily basis and begin living her life again.  I have heard countless miraculous stories from parents who have had children in the program.  We were able to tour the facility while in Rochester and it was completely amazing and gave us so much hope for Zoe's future. We had hoped it wouldn't be necessary for us to travel back out there, but it is becoming painfully clear that her life hangs in the balance right now. She needs help and she needs it soon. Her providers all believe this is the best option for her. The roadblock however, is the $44,000 required for the program.  This is all out of pocket as our insurance refuses to cover it. We will also be required to live there for the 25 days that she is enrolled. This is an added expense as well as air fare and a rental car for that time period.   We hope to travel to Mayo in February and we need to raise $55,000  to make this plan a reality. It is not easy or comfortable for us to ask for help. The last few years of medical expenses have been and continue to be a tremendous financial burden. We just can't finanace this on our own.  If you are able to help, we welcome your gift through this GoFundMe campaign. We thank you from the bottom of our hearts. If you know someone else who might wish to aid Zoe in her recovery, please feel free to share her story on Facebook or via email.  Your love, kindness, and empathy for our daughter means the world to us.  It's been a long road but we are hopeful this will be the miracle we so desperately need.

Much love and appreciation,
Veronica and Michael

Organizer

Veronica Weber Kokot
Organizer
Livingston, MT

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