To all my family and friends, 

     Hi! My name is Arawana Noelle Miller and I want to share my journey with you. My mom, Rebecca, and dad, Legare, were so excited when they found out about me. I‘m their very first baby. They found out before I was born that I might have some heart problems. Mom was sent to MUSC in Charleston for more testing, where they took a lot of pictures of me (I was NOT a fan of this and tried to hide the whole time). The amazing doctors there saw that I had something going on with my heart; at first, they thought it was a coarctation of my aorta, but it was hard to tell exactly what was going on since I moved for all my pictures. They came up with a plan for my birth so I would be as safe as possible.

I was born on December 31, 2021, at 0756 and weighed 8 lbs (mom and dad say I was the world’s cutest newborn). The doctors whisked me away to be stabilized and found out my aorta was a lot better than expected but that I had some severe heart failure that they were unable to find the cause of. Since then, I’ve had a lot of ups and downs as we have optimized my heart. Personally, I like my heart, it’s gotten me to where I am today, but it is a broken heart and since there isn’t a cause for my heart failure that can be fixed, the heart failure is only getting worse. I’m on the waiting list to get a new heart from an amazing, selfless family that will save my life. I’ve been mostly waiting in the hospital for this. Mom and Dad say I’m a fighter, my heart has been holding its own even though I have an EF of 5% (this is extremely low).

Recently, my heart got tired of working so hard for me, and I had to have a surgery to get something called an LVAD, which is this really cool machine that does all the work for the left side of my heart. I did ok with the surgery, but I did scare everyone for a few minutes and coded when I came back to the room. Then later that night they had to open my chest up again to protect my heart from the pressure build up. So I’m currently sleeping, on a lot of special meds to keep me comfortable and safe on a breathing machine called a ventilator. We don’t know yet how long I’ll have to hang out on this, but I have an amazing team at MUSC Shawn Jenkins Children’s Hospital that are taking excellent care of me. And God is always with me, helping me through.

My mom and dad aren’t the greatest at asking for help, they like to help others more. But for me they are making an exception. They have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses (look them up at COTA.org). This page is a way for you to follow my journey and donate to COTA in my honor. Any donations made here will assist with transplant-related expenses. Even the smallest donations will be so helpful.

Thanks for helping me on my journey!

Love always,

Arawana

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.