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Gracie's Story

" At 18 months old a spot at SCI opened up... during Gracie's first week of school she began to sign and started scooting as a means of mobilizing herself. We were completely amazed!! "

-- Karen,Gracie's Mom


My husband, Dustin and I had been married for nearly a year and were overjoyed to find out we were going to be parents for the first time. We couldn’t wait to tell our families the good news. We immediately started our plans to welcome this precious child into our lives.  We couldn’t help but talk about what he/she would look like or would be like. I couldn’t wait to begin decorating the nursery and buying things. During the pregnancy we had a few issues along the way, but at 18 weeks the doctor’s started noticing something wasn’t quite right. They told us our daughter may be incompatible with life & offered termination, I remember crying in the ultrasound chair just hearing the words.Our dreams and plans were just immediately crushed, it was so hard to have the usual joy that a pregnancy usually brings.

 I was not going to accept what they were telling me so I researched and we headed fora 2nd opinion at Vanderbilt. They gave us some hope, but more issues started to arise with myself and Gracie later in the pregnancy.

 At 28 weeks at a follow up ultrasound doctor’s felt she was in a critical state and must be delivered right away, but warned us that there was still a very large chance that she may be stillborn or not live long after delivery.

October 7th,2009 was one of the scariest days of our family’s life.

Gracie was born weighing 1 lb and 9 ounces and was only 11 3/4 inches long. Although she was very frail and the first days of her life were very critical, she proved the doctor’s wrong and defied the odds. She was diagnosed with Turner Syndrome during her first week of life, which explained many of the complications during the pregnancy and the need to be delivered so early. Only 1% of Turner Syndrome cases even make it through the 1st trimester of pregnancy, we felt blessed to be experiencing such a miracle.

 After spending 4 months in the hospital Gracie was sent home to struggle with eating and many delays followed by multiple surgeries and hospital stays. Early Intervention Services came into our home and brought to her physical therapy,speech/feeding therapy, and occupational therapy.

For the first 16 months of Gracie's life she was only able to lay and was immobile, this was mostly due to her severe GI issues causing severe aversions to the taste or smell of food.

She was severely delayed in her overall development. We had numerous medical professionals tell us that we should be prepared to take care of her at home for the rest of her life, that she may never walk, may never talk, may never eat or do a lot of the typical things in life that kids do.

At 18 months old a spot at Siskin Children's Institute opened up. I will say, we were hesitant at first, but during Gracie's first week of school she began to sign and started scooting as a means of mobilizing herself.  We were completely amazed!!

 She has glasses, hearing aids and a feeding tube that all assist her in her needs, but have strengthened her ability to do the things we were once told not possible.

She spent the next 5 years at the Institute meeting milestones we never thought she would meet. The staff as Siskin took Gracie under their wing as if she were their own. She learned to mobilize herself, then walk, then run. She learned to communicate with sign language, then mutter words, then speak in complete sentences.She took her first bites of food and now has an endless list of foods she will eat, including fruits & vegetables! She began to scribble on paper, then draw & cut out shapes. Outside of school she enjoys singing, coloring &playing baseball where she is one of the most determined players on the team.Listing all of these accomplishments sounds so simple, like they came naturally, but they didn’t. It took daily intervention & lots of determination & patience which the institute provided to her throughout her time there. Having therapies offered in the classroom and being in an inclusive environment where her peers modeled things she needed to learn gave her the extreme motivation to achieve all of these things. She learned many of the skills that set her on track for her next step in life ...

 She graduated from SCI in May 2016 and now attends elementary school. We greatly miss the Institute and are eternally grateful for all of the love and support they have given to our family through the years. Our youngest daughter Lila will continue going to Institute where we hope that she can become a friend to another child in need and model these same behaviors and skills that have been so beneficial to Gracie, because she would not be where she is today without having this program available to her.

  -- Karen,Gracie's Mom