The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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My Beautiful Baby Girl Nyla` Skye Marie Simmons
My Heartbeat Nyla` Skye Marie Simmons
My Heartbeat Nyla` Skye Marie Simmons
My Beautiful Baby Girl Nyla` Skye Marie Simmons

My daughter Nyla’ Skye Marie Simmons was born on April 9th, 2011. She was born with Down syndrome (Trisomy 21). Nyla` was born at 3lbs, 14oz and 17in. long, also known as a premature baby. When I found out I was having a child born with Down syndrome I didn’t know what to do, let alone expect. I tried to think positively for the remainder of me being pregnant and it turned out better than I expected. When I gave birth to her I began to cry tears of joy because I was so happy about being a mother, as well as sharing my love for someone who needed it most. Nyla` also had intestinal problems as well as a heart defect, which also comes along with having a child being born with Down syndrome. I loved her so much and I’m pretty sure she knew. The baby shower that was given just a week before she was born (by family and friends) was the greatest time I’ve experienced. So much love was shown; so many presents and everyone had a great time. Nyla` meant the world and more to me. Even though I was 18 at the time, I knew that I finally had someone to love and call my own. With her being born prematurely, she had to spend her days and nights in the NICU (Neonatal Intensive Care Unit). I went to see her every second, minute, hour and day that I was allowed to. Despite the pain I was in I still made time to see her because that’s the job of a Mother. It’s no longer about you but your child and that’s who comes first. I remember hearing her cry for the first time, feeding her bottle and watching her sleep. I was afraid to change her pamper because she was so tiny. Nyla` wasn’t eating so they gave her a feeding tube but that didn’t help much. So the doctor performed a surgery in her intestines to help process her food. During that procedure she lost a lot of blood which resulted in a blood transfusion. But on April 12th, 2011 I received a phone call around 2 am from the hospital stating that Nyla` wasn’t going to make it. Right then and there my heart sank. When I arrived at the hospital she was already gone. She looked so peaceful and beautiful as if she was only sleeping. I share this story because I was only 18 when I gave birth to a baby with Down syndrome. I would have never expected this but; she changed my life for the better. I cry everyday but these are more tears of joy. Here I am at the age of 21 enrolled in college, have my own car and working. So I say to anyone who has a child with Down syndrome don’t love them any less than you would love yourself. Allow them to be your blessing and not your burden.




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Sioned Parry, United Kingdom,
11/15/2013 12:56:27 PM
What an emotional story, you are ever so brave to go through that much pain at such a young age but an inspiration to all future parents. well done you, Nyla would be ever so proud of her amazing mummy. We are currently having tests now to find out if my unborn baby has downs as i have been told im at high risk. your story has inspired me. There is no doubt I am keeping my baby safe anyway but you have helped me by knowing I'm not alone. Thank You.

Natalie Blanco, United States, NY
10/18/2013 10:46:24 PM
Rest in peace princess <3

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