Zach needs your help!
The Short Version: Zach’s battle – It sucks when hope comes with such a large price tag!
Zach has been fighting for his life since birth, he is now 14. He has had more than 23 procedures/surgeries, at least 3-4 hospital stays per year, and at times weekly doctor’s appointments with multiple and various specialists.
Zach was born with Transposition of the Great Vessels/Arteries (TGA). TGA is a serious but rare heart defect present at birth in which the two main arteries leaving the heart are reversed or transposed. He had a 9 ½ hour open heart surgery leaving him with only one coronary artery. His recovery was less than perfect and he had many complications. In addition to the TGA diagnosis, they also found that he had Hydrocephalus (excess fluid on the brain). He was unable to endure the recommended surgery due to complications and his recovery from his heart surgery. This is being watched closely and he gets migraines often.
As an infant he was diagnosed with RSV twice. Treatment included lengthy hospital stays and heavy doses of medication. Zach is still susceptible to respiratory illnesses and often gets pneumonia. 2 years ago he was diagnosed with metabolic syndrome and he is insulin resistant (a cluster of conditions that increase the risk of heart disease, stroke, and diabetes). He also has an immune deficiency known as Primary Antibody Deficiency. Due to his immune deficiency and frequent and often lengthy hospital stays, he has been homeschooled for the past several years.
His battle continues. Last year, Zach got very sick. He lost total control and feeling in his legs. He was admitted to the Children’s Hospital where he was diagnosed with Dysautonomia (malfunction of the autonomic nervous system) and Postural orthostatic tachycardia syndrome (POTS). He is currently having symptomatic issues related to the Dysautonomia and POTS with little or no relief. These symptoms include high and low blood pressures, extreme fatigue, severe pain throughout his body and numbness. Zach is also undergoing extensive testing to ensure his kidneys are functioning correctly; blood work and his symptoms suggest serious issues. If all these symptoms go untreated there will be serious life threatening permanent damage.
To prevent further damage from his current diagnosis he needed to see an Autonomic Doctor. There are only a few in the country and they are considered “out of network” resulting us paying directly out of pocket for any type of treatment. We went to the Mayo Clinic in Minnesota, which cost us more than $25k. It was a huge success in that they have come up with a plan of action that includes further testing, as well as, some treatment at MUSC in Charleston, SC. This facility is much closer to us but Zach will need to travel there multiple times a month for diagnostics, treatments, appointments and possibly surgeries. Which means hotel stays and travel expenses.
Up to this point we have been able to find most of the needed doctors and treatments locally but there have been significant costs to the family. Insurance only covers a small fraction of the medical costs. I had to quit working in order to manage his healthcare and to homeschool Zach and his brother Matt. We have sold our house, moved to an apartment, and we have found ways to make ends meet to cover the medical bills. We would do it all again without hesitation just to see Zach continue to enjoy life and bring joy to those around him. Now we are faced with limited options that all have a large price tag. That doesn’t mean we quit on Zach, we just need to humbly ask for help.
We have been very lucky to have such wonderful and thoughtful people in our lives that have supported us over the years. It is extremely difficult to ask for help but I have been encouraged by several close friends to reach out and ask for the funds needed to get the care and treatment for Zach. Each small prayer and donation can make a world of difference in Zach’s hope for the future.
Thank you
