My name is Nina and I am fundraising on behalf of my sister, Daisy. Daisy was born with congenital heart defects and has been a life-long cardiac patient. When COVID-19 came, I decided to retire from teaching early, hoping to drastically reduce the chances she would get the virus. Unfortunately, she contracted COVID on a visit to see her heart doctors at Mayo Clinic in 2024. She spent 39 days locked in a hotel room, being monitored by nurses. After battling debilitating symptoms for years, she has been diagnosed with Long Covid. This has impacted her health in countless ways. Long Covid has caused inflammation in Daisy's body. This impacts her activities of daily living, and she is unable to work. Extreme fatigue, brain fog and long bouts of physical symptoms have led us on a journey to countless doctors- and no answers. Daisy is currently part of a study at Mount Sinai Hospital in New York City, being seen by the top Doctor who is a specialist in Long Covid. She is part of a research study to help find out what long covid does to the body, in an effort to help others. As I write this, she is at The Cleveland Clinic, after it was discovered that she has had two strokes. The inflammation in her body has caused numerous other health scares, including biopsies, hospitalizations due to vaccine reactions, and medical interventions. Her cardiac issues are a concern, and multiple neurological tests have been done to find the root cause of the strokes. Does she have health insurance- yes she does- and it is excellent. However, they will deny repeat tests that are needed. They have no codes for Long Covid yet to get disability. Co-pays pile up very quickly, as do travel expenses to see the only doctors who can put the puzzle pieces together. Have we tried to seek other assistance- yes we have. More denials- as this is all new. Many hospitals will not allow you to be seen if you have any balance at all. When I say we have tried everything, I mean it. Push has come to shove. It has become apparent that Daisy is in this for a long stretch. Daisy has dedicated her life to helping others with their health struggles. Throughout the past four years, she has connected to people across the country who are going through similar struggles. She was a child life specialist at Stony Brook Hospital for years, she started the local chapter of Cancer Care, and she was the primary caregiver for our very ill mother for 5 years. She has been a health advocate for others, raising money when needed and heeding the call. Her greatest frustrations lie in the fact that despite being her own health advocate, a full-time job, she has no answers. At The Cleveland Clinic, she is finally finding the answers. Her hematologist has been the key to solving it all. Long Covid has caused her body to attack itself. Her immune system is apparently damaged and she is being worked up for an autoimmune disease. It is time to rally for her now. Despite the struggles, she continues to smile and fight. I appreciate your time in reading this, and am filled with gratitude that I am able to try and help her. xo Nina
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