Lillyanna Gill

First post: Dec 6, 2021 Latest post: Dec 22, 2021
Lillyanna is my name I am 10 years old and I was born with NF1. For people who don’t know this is a neurological disorder that causes me to have birth marks all over my body that the doctors call cafe o le spots, other things that come with my NF1 is a learning disability so I don’t get a lot of things other kids do. But I am always happy and so full of energy that not even the NF1 can’t slow me down. Well until 3 weeks ago I came down sick my mommy took me to the doctors and they said I had a stomach bug so we went home to rest and make sure I drank enough water. Couple days go by I still don’t feel good I can’t stop puking and I’m starting to see double vision, mommy takes me back to the doctor and they want mommy to get my blood taken so mommy takes me to urgent care and they get my blood, few more days go by and mommy calls the doctor for my blood work and they told my mommy I was fine but she knew I was still sick so she got more blood taken from me. Few more days go by me and mommy are sitting in the couch watching t.v and I puked so mommy takes me to Oswego hospital and is crying and scared for me. Oswego would not look at me and my mom was yelling at everybody because she was so scared. Mommy gets me to Syracuse and they give me water in a bag to go into my arm and I feel better so the doctors send mommy home but mommy wanted to get a scan done but the doctors didn’t want to listen to my mommy. We go home I feel okay I can eat and I keep it down, daddy takes me to my doctors for a check up after the hospital and the doctor wants me to go see an eye doctor the next day. Daddy took me because mommy had to work. They told my daddy that he needed to go to the hospital and get me a scan done but daddy didn’t know the lady meant for me to go the same day. So mommy gets a call fro the eye doctor the next day and mommy makes daddy come to take us to get a scan but when we got ready to go I don’t remember much but mommy said I had a seizure. We take an ambulance to the hospital in Syracuse and they do the scan to my head and come to find out mommy knew there was something wrong and they said I have a lump in my head that they have to do surgery to get out. Mommy has been so upset and daddy and I don’t want to upset them so I try not to tell them if I am hurting because I care about my mommy and my daddy. But I got my surgery and I am doing good mommy calls me her hero everyday day now and that makes me feel special. I’m glad I have my mommy and she never gave up on me.

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