Help With transition Care And Medical expens

Hi, my name is Sky. Thank you for taking time to read my story. My family and I need help with the cost of moving out of state to receive appropriate medical care. Our state has become a place I no longer feel safe and many doctors are unwilling to take me on as a patient. Any money donated will fund the direct cost of moving, as it was very expensive for us to move here 8 years ago and we all know times have changed, it’s going to be even more to move now. Our lease is up at the end of April 2024, then myself, my mom, my sister, and our 2 cats and our dog will be starting over again.

My Story:

I will be 21 years old at the end of January. That alone is a huge milestone since I wasn’t expected to live long due to my medical complications from Tuberous Sclerosis Complex. TSC causes tumors to form in the organs of my body, impacting the organ’s functions.

When my mom was pregnant with me, they found the first tumor in my heart. The doctors didn't feel I would make it through her pregnancy, but she fought to keep me in until she was 26 weeks along, when during a test the doctors panicked because they couldn't pick up my heart beat. I was born by c-section and was life-lined to a hospital in DE. The tumor was blocking 95% of my left ventricle, half of my heart. This is called Hypoplastic Heart Syndrome. I had my first open heart surgery at 4 days old. I have had multiple surgeries over the years to help me keep going. It has not been an easy battle. I have complications from the tumors in my brain, as well as my kidneys and other organs. I have epilepsy as well due to my brain tumors. I do not have any organs that aren't affected. My last open-heart surgery was done in 2013.

In 2015 my mom was told there is nothing else the doctors can do for my heart anymore, and because I have tumors in all of my other organs a heart transplant wasn’t possible. She was told if there was ever a time to move to a place that would be easier for me to breathe and enjoy the remaining time I had, it was then. So, in early 2016 we packed everything up and my mom moved my sister and I from Pennsylvania to Florida. That was almost 8 years ago! I think that shows, while it was scary to leave all that we loved and knew behind, that was the best choice she could have made for us. She made a page a long time ago on Facebook for me that shows a lot of the hospital events to keep others updated on my battles. I have recently taken over it as I am older now and want to share from my point of view. It’s called Skys Warriors, it used to be Arianna's Angels. (I'll explain the name change in a moment.)

Besides being a disabled person, I am also a trans male. I came out to my family and socially 2 years after agonizing over what was right for me. At one point in my life I was very low because I didn't know how to express what was going on. All those years of fighting for my life and medical issues I missed a big part of the puzzle. Who am I? And why am I fighting so hard to live through this complication or that one? Why am I so miserable? My mom handled all of the medical stuff with full gusto, telling me she believed in me, she supported me even when I signed a DNR because I didn't want to keep fighting this surgery or that one. She said "I love you and will support you no matter the battle. I just want you to live". But mentally I didn't know what truly living meant. I have for what it seemed like forever, always been in counseling. I began questioning so much. I just couldn't put a finger on what is right for me and who I am. I have a wonderful doctor who ran a lot more tests after I talked to her about some things I was thinking and feeling. She was AMAZING! She listened to me, and all of my concerns. We knew I had Polycystic Ovary Syndrome (PCOS), but we didn't know the extent of what that meant. In my case I do not make enough female hormones. I've always made a lot more male hormones and it was causing problems like weight gain, mood swings, migraines, increase in my seizures that were thought only triggered by my brain tumors, because my body kept trying to make it right, and failed. I'm on a lot of medications for my heart and brain involvements, as well as depression, anxiety and gender dysphoria. I started my medical transition after 3 years of gender affirming therapy and consultations with all my doctors. I figured out the missing piece. I am Sky. I AM a male!

Why did I choose the name Sky? In the hospital I spent a lot of time in the CICU. I made many friends, friends became family. My older cardiac brother "S" was a huge influence in my life. When we met, he was a stubborn 17-year-old high school football player who crashed in field. He was very sick and was told he needed to have a heart transplant. Boy was he stubborn. One night I heard the nurses talking to him and he was saying he didn’t want a transplant. It made me mad! I went to his room and introduced myself to him and had a heart-to-heart talk, no pun intended. I told him where there are a lot of risks involved, but he has the chance to have a new heart and be somewhat healthy again. Me? What I have is what I have, there will never be a transplant in my future. He was shocked at my words and we both cried for hours. Not long after that talk he was wheeled into the OR and was given a new heart. We used to get into all sorts of trouble on the unit. We would stay up late, have nerf battles with our unsuspecting nurses on duty, ha! One time we even got grounded to our rooms because we snuck to another floor to go explore. Ahh, the life of a cardio kid! There were many times when S and I had to encourage each other. Our procedures and complications were at times painful, and we were so tired, so very tired. My nickname from S was Sky. He was telling me that while we were so different in so many ways, we were so alike and I encouraged him all the time. He always said to reach for the Sky. Little did I know that was my name. It just felt right! I lost my brother in March 2019, but I always hear him saying "Keep reaching Sky".

Once I started my transition, life got better. I've been happy and thriving. Trying to make the most of everything and trying to LIVE to the fullest. There are so many obstacles in place, for instance I aged out of pediatrics doctors and now have to see adult doctors. Having half a heart and all my other involvements makes that difficult enough to find care, add that I am transgender and the doctors who once would've considered taking on my care, now only give silence. I just saw my neurologist for the very last time because I turn 21 at the end of Jan. We met him when he was a student in Tennessee studying TSC with some of my other doctors long ago. He explained that while he would keep me forever as a patient if he could, he must give me a hug and hope for the best. He gave some suggestions, one of which was to move out of FL and go someplace safe. While all doctors have to treat me if I go to an ER HAVE during an acute issue, not all doctors here in FL are willing to tackle a complex patient who is also transgender.

Who knew the very state we moved into, to help me live out whatever life I was going to have, would be the very state that made me fearful of truly living my life? So, we need to move to a safe state. While raising and caring for us, my mother is also a cancer survivor. She has been sick a lot due to a compromised immune system, and then having Covid many times. She works hard to keep us all going. So I am doing this fundraiser to help her, help us. We are not just looking for a safe state as a trans person, but it also must have good medical care that both my mom and I need.

Please if you find it in your heart and are able to give, even if its $1, please do. If you are unable to donate, please consider sharing this as much as you can. Thoughts, prayers, positive vibes, all are welcome!

Thanks So Much Sky T Elliot