Sean's Medical relief fund
Organized by: Catherine Couture
On April 17th 2015, my fiance Sean Mazzarino (age 24) was suddenly struck with severe complications of what originally seemed to be a minor viral illness.
We live in rural area, with limited access to medical care and specialists, and the exact nature of his illness is still unclear after 10 months of extensive testing, 4 emergency room visits, evaluation by local cardiologists and neurologists, and allergists. It is thought that he had viral infection of his heart (viral myocarditis) and also developed a disorder of his autonomic nervous system, and it has dramatically worsened his previously mild asthma.
His initial symptoms kept him essentially bedbound for several months, until at tentative diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) was made and medications prescribed to control some of the symptoms. However, after some initial improvement he plateaued and now has actually declined over the last two months. He remains homebound except for medical appointments, and totally disabled from school or work. He went suddenly from being able to run 5k or to do heavy work on his fathers farm, to some days not being able to do anything more than get to the bathroom and back.
The autonomic dysfunction makes it difficult for him to regulate his body temperature, blood pressure, heart rate, breathing, blood sugar, and fluid balance. It leaves him weak, light headed and short of breath. He also suffers from chest pains, muscle spasms, numbness and tingling, lack of coordination, difficulty concentrating, poor memory, and disturbed sleep. He cannot tolerate being out of air-conditioning for long, has to keep liters of water and salt pills with him at all times, and has to be able to lie down on short notice so as not to pass out. He is also exquisitely sensitive to any irritants in the air which will trigger his asthma.
We exauhsted our resources here in Hawaii and raised what we could to travel to Stanford University to get some specialty testing done. On April 26 Sean was Diagnosed with POTS syndrome, as well as a heart condition that is being explored still by cardiologists. Due to the severity of his condtion we have decided to move back to the mainland to get him treated at a POTS center on the East coast, where my family lives. Unfortunately we've used all our savings at this point to get his medical bills paid, and to get him diagnosed.
We are still getting testing done here on the island, trying to find what specific form of this condition he has, along with alot of extranious cariac testing that insurance doesn't want to cover, we appreciate any help we can get. Thank you for your time.