Hi, my name is Daviona Presley (23 years old) and I’m Stormi Rose Presley Mother. Stormi was born January 3 2022 and passed away April 1 2022. When I first found out about Stormi Rose I had found out through a emergency CAT scan I had gotten into I really bad car accident where I was knocked unconscious for several hours. After I woke up the doctor told me that he wanted to tell me something. He wanted to tell me that I was pregnant. In the same sentence proceeded to tell me that I needed to terminate her but he didn’t tell me why. I went to my first appointment the next day and they told me that I was 11 weeks pregnant. I scheduled my first appointment at the high risk doctor and I was told that my daughter had congenital heart failure and only one main vessel in her heart and that if I didn’t terminate her I would’ve die while giving birth because she was killing me from my insides. I didn’t terminate her because they said they were going to FIX IT and that she was still going to live life normally. I refused even if that meant I left and she stayed. 3 days before I had Stormi I was hospitalized because I was having real contractions. 3 days later I had Stormi rose she came out breech but she also wasn’t alive. The nurse begin to tell me that she wasn’t alive but I looked up at my baby she kicked her leg up and than they flew her to Children’s Hospital Of Atlanta (#1 hostipal in the south region of the U.S) in the helicopter. When I got there I couldn’t believe what I was hearing my daughter had 14 internal abnormalities and 3 organs missing. Which made her #1 in the world with her condition far as we all knew. Because they didn’t read about this or practice this in their textbooks. We didn’t found out everything at once but over the span since her birth we found out her anatomy was the first of her kind. Her stomach was just storing my milk but it was no way out. Her small intestines were wrapped around her large intestines in knots. She had no ducts in her biliary system , a three branch airway , her trachea wasn’t going to grow with her so they were the size of a premiee babys airways would’ve stayed that way if she wasn’t going to have surgery. She had liver , and heart failure and several other things. Before my baby had turn two months she already had 5 surgeries. Every surgery my daughter had her body rejected it they went left she went right. I lived at that hostipal slept in the chair next to her bed every night . I never really left the hospital only if I went to go to school . I missed a lot of days because I always needed to be there. I had to be there for my baby. We had several good days but when the bad days they were horrible. My daughter would have tact spells (her airways and would close up every time she breathe) which would make her cry more. Every time nurses touch her they would cause pain by sticking her with needles so really quickly my daughter start to associate pain with touch. Later on they discovered that my daughter had 2 different sleep apneas where she would stop breathing in her sleep for about 20 seconds. From there on my daughter started to decline and later on passed away in the CICU. Stormi was the first of her kind so it isn’t a name for it. Im asking  for everyone to please share this even if you not able to donate Any montrealgift will be appreciated. Stormi’s life is the most interesting story I have seen and I will continue to tell it.

#Stormi’sAwareness