My Story

I, personally have a sister that has Mosaic Trisomy 18.  It was really hard to find out about this. All throughout my mom’s pregnancy I would always imagine me and baby sister playing dress up, me doing her make-up and all that stuff that sisters do together. It was wonderful while that imagination lasted. We found out that my baby sister was going to come to this world sick, thanks to an ultrasound. But we never knew that she was going to have T-18. I’ll never be able to forget June 22, 2007, that day was the beginning of a wonderful but sad life story.

Finally the day to meet her came. It was around 8 when she was born. When my dad brought her outside for us to see her, I was surprised. She was so little; I could literally fit her in one arm. Hours passed and we started to wonder how was it that they still didn’t let my mom see her daughter. Finally, they brought her into my mom’s room. Thats when they told us they had to transfer her to Texas Childrens Hospital.

My sister spent from day one of her arrival there to about when she was 2 months old in the hospital. My mom not yet fully recovered of her c-section was there day and night. All she went home for was to take showers and eat. I really admired my mother at that time. Finally, she was diagnosed with Trisomy 18. The doctors that were working on her explain what that was. When we heard that does babies don’t live much, I and my mom broke down in tears. Me, like my mom almost never left the hospital. So it was really crushing to hear that news. My mom went into some kind of depression; she would never leave the hospital! She won’t even eat; all she did was stare at our angel and cry.

That of course made me sad, but after that day they told us what she had, I never cried in front of my mom again. For the reason that all her friends would call me and tell me that I was her only support that I needed to be strong for her. That let alone was a lot for me to do, I was only 11 years old and i couldn't cry out what i felt inside nor even talk to my mom about it. So that was alot on my shoulder.


As the year went on it got harder for us.

Thank God and Julia got to live past her 1st year. Which am not going to lie, was the hardest. Any little thing that happened to her was very risky. So you can imagine how much care we had with her. Her first year was really hard for me because I couldn’t get used to the idea that one day she'll be gone... :(


Its scary. I always think about that one day that I'll never see her smile again or hear her cry. I burst out into tears. Every night that passes by I cry myself to sleep. I can’t help but thing the worst. I always ask myself “How is everything going to be once she’s gone?” ” What is it going to be of my family?”... Those questions are always hunting my mind. I've always been scared because it could be today, tomorrow, or whenever and im not ready to let her go yet. I still have many things to teach her and expirience with her. I feel that when that day comes I'll never be able to be myself again. My life with her is full of happiness and without her its going to be empty. She has becomed my everything, theres not a thing i wouldn't do for her. And it brakes my heart that it had to be her. But i dont even question it, it is what it is.

My baby girl has been through a lot already. I’m proud of her because she is still holding strong. However, its really hard to deal with her because she still doesn’t understand much. The doctors said her mentality is 1 year in a half behind, which means that right now she still thinks like a 2 year old. It’s harder to get her to listen to you. So you have to have plenty of patience.

She is now about to turn 4 years. I couldn’t be any happier of her and how far she has come.

And I would give up my life for hers in a heartbeat <3