Hope for Tom

My name is Kristy Dvorak and I have been happily married for the past 13 years to my husband, Tom.  In 2013 we moved from our home state of New York to the warm and beautiful state of South Carolina in order to pursue our future endeavors.  We enjoyed hiking through the mountains and strolling along the beautiful coast with our dogs in tow.  Every weekend was a new adventure! However, after a year of southern living, Tom started to become very ill and his job (and our adventures) were put on hold. In February 2014, we began making visits to his general care doctor in an attempt to find out what was causing his symptoms.  By September 2014, frequent trips to the ER became the norm as his symptoms worsened: skin rashes, swelling of the feet and face (lips), head pressure, and exhaustion. Those trips then became longer as Tom became a patient at the Medical University of South Carolina Infectious Disease Department.  In hopes of getting a diagnosis, we drove the four hours back and forth to his appointments.   While his symptoms worsened, it soon became apparent that they needed the assistance of another professional opinion.  In March of 2015, we were referred and accepted into the Mayo Clinic in Jacksonville, Florida.  By the Grace of God, we had multiple appointments within a week and set out on the five-hour journey to this most amazing clinic.  After staying a week and seeing a team of specialists, it was believed that Tom had previously become ill with, what the doctors say, was some sort of “super infection” that was either fungal, parasitic or bacterial in nature.   They believe that this “infection” wreaked havoc on his system causing Hashimoto's Thyroiditis, Small Fiber Neuropathy, and numerous sensitivities to nearly everything around him.  They started him on medication as we made bi-weekly and monthly trips back and forth for follow-up appointments.   During this time, the number of sensitivities that my husband developed increased and began turning into what we now call "episodes" and the doctors began thinking that it could be something other than, or in addition to, the previous diagnosis.   Unfortunately, it was still too soon to tell as it can take some time for the medications to take full effect and for his body to mend itself. Additionally, a visit to the ophthalmologist revealed that he had developed cataracts and glaucoma in both eyes. I felt this strong push from God to make a change. In an effort to reduce his reactions and hopefully narrow down the causes of his symptoms, we decided that it might be best to move to a colder climate and possibly get yet another opinion from a different hospital up north. I knew that we couldn't survive on my teaching salary alone in SC. I also understood that the cost of living was much higher in Massachusetts but knowing that I would make more as a teacher, I was willing to take the risk and trust God!  I was hired as a Reading Specialist in Massachusetts where I had the opportunity to be trained in Lindamood-Bell Learning Processes.  We knew that we would still need to continue trips back and forth to the Mayo Clinic as they were still in the midst of treating him and researching other possibilities, while we pursued another opinion.  So in late August 2016, with the financial help of friends and family, we purged almost everything that we owned (which was nearly everything that he had a reaction to), rented a truck and set forth to the next stop on our journey… Massachusetts! The first week, we stayed in a hotel as we searched for an apartment that Tom wouldn’t have a reaction to.  But, during our stay, he had an anaphylactic reaction.   Although it was (and still is) difficult to watch him go through this, I never lost hope as we continued to look for a place to live.  Finally, the day before I was to start work, we found a place to live!  We were hopeful that this would be the beginning of the end to my husband’s illness. However, the reactions/episodes worsened. He began having reactions to everything around him.  I immediately got ahold of his doctor’s at the Mayo Clinic and once again, by God’s grace, my insurance company allowed us to continue care with them. We had no idea how we would afford the trips to and from Jacksonville, Florida but I knew that God would provide a way! While we waited for his scheduled appointment in November 2016, his reactions worsened and became so bad that he was no longer able to sleep in our bed, eat any foods that I brought in from my car and his feet swelled so bad that he couldn't and still can't wear shoes and resorts to only flip flops year round. Often times we were unable to run the refrigerator, washer, dryer or cook on the stove without him having an adverse reaction, and we still live with this. In November 2016, the neurologist at Mayo put my husband on a steroid and ordered more tests and referrals to other specialists. In December of 2016, the amazing team of specialists referred my husband to a phenomenal geneticist who thought that there was a high possibility that Tom may have Mast Cell Disease.  He explained that it could also be another hereditary disease as well, but in an effort to get a diagnosis, he ordered genetic testing and referred us to another specialist (who we saw in January 2017) to help in the process.  In the interim, the doctors ran more tests, put him on a steroid to control the episodic swelling, prescribed epi pens until we get a diagnosis and they could find the root cause in order to know how to treat his symptoms more effectively.   In late April 2017, he was diagnosed with the gene mutation for SDHa and this gene is known to cause a myriad of diseases and disorders. For more information regarding this, visit: https://www.frontiersin.org/articles/10.3389/fonc.2019.00053/full.  He began numerous scans, labs and tests for hereditary paraganglioma-pheochromocytoma syndrome and various other diseases or disorders relating to this gene mutation.  "Hereditary paraganglioma-pheochromocytoma is an inherited condition characterized by the growth of noncancerous (benign) tumors in structures called paraganglia. Paraganglia are groups of cells that are found near nerve cell bunches called ganglia. A tumor involving the paraganglia is known as a paraganglioma. A type of paraganglioma known as a pheochromocytoma develops in the adrenal glands, which are located on top of each kidney and produce hormones in response to stress. Other types of paraganglioma are usually found in the head, neck, or trunk. People with hereditary paraganglioma-pheochromocytoma develop one or more paragangliomas, which may include pheochromocytomas. Although most paragangliomas and pheochromocytomas are noncancerous, some can become cancerous (malignant) and spread to other parts of the body (metastasize). Extra-adrenal paragangliomas become malignant more often than other types of paraganglioma or pheochromocytoma." https://ghr.nlm.nih.gov/condition/hereditary-paraganglioma-pheochromocytoma. As time passed over that summer, we realized that we needed to make a move. When I think back to this time period, I remember feeling that our time in Massachusetts wouldn't be long and that we would eventually make our way back down south. This time, God would take us near the Mayo Clinic. We got rid of everything else we owned and moved to Jacksonville, Florida to pursue treatment.  He had two MIBG scans done. One was completed in May of 2017 and the other, a little over one year later in July of 2018. Both scans showed a Pheochromocytoma in the left adrenal gland that had increased in size from one year to the next. The next step was to complete metabolic tests to see if Tom’s hormone levels were also raised. The tests came back highly positive. During this time, Tom underwent a minor surgery for a muscle biopsy where the results revealed denervation atrophy. Due to the rarity of this gene mutation and little research that was out there to educate the medical community on the latest information, we decided to pursue another opinion about diagnosis and treatment. We went to Moffitt Cancer Center and soon found ourselves in the same predicament. But we didn't give up. We continued to research, dig deep and PRAY for someone who would be willing to take on his case.  In October of 2018, God led us to the hematology/oncology department at UF Health right here in Jacksonville and by His grace, they agreed to take on this complicated case and haven't given up since.   His doctors ordered another Metabolic test and this one was even higher than the last. Therefore, a (PET/CT) scan with 68Ga-DOTATATE was ordered. It also came back positive for a Pheochromocytoma in the left adrenal gland and a possible metastasis was found in the neck. More metabolic tests were ordered and once again, they have come back positive. A bone marrow biopsy was completed and found positive to have rare atypical CD25 cells (tumor growth and malignancy). Throughout this time, Tom has been getting worse. The episodes cause his body to swell, he has slurred speech, abnormally high blood pressure and heart rate, altered vision, swollen abdomen, head pressure, syncope, dysphagia, involuntary movements, adrenal impairment and numerous other symptoms.   In April 2019, we had to call an ambulance during one of his episodes and he was admitted to the hospital. His blood pressure and heart rate were so high that they put him on blood pressure medication to lower the pressure and try to block the release of hormones from the tumor.  He was recently diagnosed with dysphagia and is unable to complete numerous procedures due to this. More scans and metabolic tests were ordered and a CT of the neck has left us with more questions and more appointments. He currently has difficulty even getting out of bed without the tumor releasing the catecholamines and causing another episode.  Therefore, leaving the house for appointments is a huge challenge. Currently, we are praying for the insurance company to pay for a second (PET/CT) scan with 68Ga-DOTATATE to look for any other metastasis and thanking God in advance for providing Tom with this scan. Once the scan is complete, we will know whether or not the doctors can remove the glands/organs with the tumors or if another specialized treatment is needed for anything that's metastasized. Careful steps have to be taken in removal and biopsy of these tumors as the surge of hormones that can be released, if disturbed, could potentially be fatal. I work three jobs to provide for the two of us. In August of 2018, God led me into an amazing reading therapist position (where I could put my previous training in Lindamood-Bell Learning Processes to work) and Pre-Kindergarten teaching position. Shortly after, I was asked to be the director of Children's Ministry at the church/school where I teach. When I'm not working, I'm taking care of Tom. However, the summer months don't allow for a stable income as a teacher and meeting our financial obligations is in constant jeopardy.  The past 5+ years have been an incredible strain and we’re so anxious for an accurate diagnosis and treatment plan that can give us hope. We are in desperate need of prayer right now! We are thanking God in advance for this upcoming scan, hoping for answers and clarity on how to conquer this Goliath. Tom needs healing (physically and spiritually) so that he can live a new healthy life! We are asking that you pray with us with just one word… "#breakthrough"!  Any contributions to help relieve our family from this continuous financial strain would be an incredible blessing! We are trying to raise money to help with our ~ $2,500 monthly overhead:  1. Health Insurance monthly cost for Tom ($298.71) - Need to pay it by this Friday or he loses coverage. 2. Cost of medical bills ($600.00) 3. Cost of copays for prescriptions ($40.00) 4. Weekly groceries and gas ($200.00) 5. Rent for July and August ($1225.00/mo)- Need to pay this by the 3rd or they add $100 late fee. If not paid by the 15th, we will get evicted. 6. Cost of monthly electricity ($99.59)    God bless each and every one of you for your compassion during this very difficult time, and please keep us in your prayers.  "#breakthrough" God Bless ~ Kristy and Tom


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Kristy Dvorak 
Jacksonville, FL

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