My name is Abbie Grace Whitaker. I am 5 years old. I weigh 20 pounds and am 36 inches tall. I do not sit up by myself, walk or talk. I have a chromosomal abnormality called 1p36 Deletion Syndrome. This is how God made me and this is my story.
When Mommy was pregnant with me they told her that something wasn’t right. All of the special doctor’s appointments started when she was 17 weeks pregnant. There were many different complications they were finding with me. They tried to talk Mommy and Daddy into having an amniocentesis to see what I had. Mommy and Daddy prayed about it and decided not to because they did not want to risk losing me. They trusted God and said, “however long God wants her to be here then that’s how long she will be here”.
I was born on March 16, 2006. I was 4 pounds 2 ounces. I spent 2 months in the Neonatal Intensive Care Unit (NICU). In that time I had testing done and at 8 days old the doctors gave Mommy and Daddy my diagnoses. They told them they didn’t know anything about it and they should let me “write my book one day at a time”.
In my short life I have overcome many medical hurdles. At 8 days old, 3 pounds 14 ounces, I had my first heart surgery. Then at 1 month I had to have a feeding tube placed in my tummy to eat because my heart was still bad and I did not have enough energy to eat. When I was 3 ½ months old, 5 pounds, I had my second heart surgery. Mommy and Daddy were terrified through all of this. All they could do is pray and trust that God had a plan for me. I have had three sets of tube in my ears, diaphragm surgery and hundreds of sedated and no sedated tests. Through this the medical field told Mommy and Daddy a lot of negative things. My Mommy and Daddy say that I am here for people to see JESUS because none of the doctors ever expected me to go home from the hospital when I was born.
I have been in speech therapy, occupational therapy and physical therapy since birth. I get more control of my body, stronger and am improving cognitively all of the time. What Mommy prays for is that my progression, no matter how slow, never stops.
I am now in Kindergarten. Mommy says God gave me the teachers I have this year not only for me but for her. She had a really hard time sending me to school but God knows what she and I need. They love me so much and realize that I am not just a pretty little girl but that I have a brain that works and needs to be challenged.
There have been many things in my short life that have shown my family and other that God is good. There have been many people that have shown up and been huge blessings to us. We have an awesome church family that loves me. The nursery even raised money to by me a chair to use at church so I can sit up and play on the floor with other kids. I also got a walker given to me to help me become mobile by a sweet family from therapy. Now, my family, through Younique Legacy Foundation has been blessed to have GREAT family pictures taken.
God is in control of every situation and has proven that in me time and time again. Mommy asked that you pray for me as we go on this path God has places us on. If you would like to follow my journey please visit me at www.abbiegrace1p36.blogspot.com
There are so many families with a special needs child and many more with a ill family member. Family portraits, many times are the items that are forgotten or may be the one thing famlies would like to have, but find it difficult to afford a professional photographer, that will bring out the special qualities and help capture the legacy of their loved one. Your donations to Younique Legacy Foundation will enable these families to acquire precious memories at no charge.
