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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

Gracie smiling with glasses on

My husband, Dustinand I had been married for nearly a year and were overjoyed to find out we weregoing to be parents for the first time. We couldn’t wait to tell our familiesthe good news. We immediately started our plans to welcome this precious childinto our lives.  We couldn’t help but talk about what he/she would looklike or would be like. I couldn’t wait to begin decorating the nursery andbuying things. During the pregnancy we had a few issues along the way, but at18 weeks the doctor’s started noticing something wasn’t quite right. They toldus our daughter may be incompatible with life & offered termination, Iremember crying in the ultrasound chair just hearing the words.Our dreams andplans were just immediately crushed, it was so hard to have the usual joy thata pregnancy usually brings.

I was not going to accept whatthey were telling me so I researched and we headed fora 2nd opinion atVanderbilt. They gave us some hope, but more issues started to arise withmyself and Gracie later in the pregnancy.

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

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

Gracie was born weighing 1 lb and 9 ounces and was only 11 3/4inches long. Although she was very frail and the first days of her life werevery critical, she proved the doctor’s wrong and defied the odds. She was diagnosedwith Turner Syndrome during her first week of life, which explained many of thecomplications during the pregnancy and the need to be delivered so early. Only1% of Turner Syndrome cases even make it through the 1st trimester ofpregnancy, we felt blessed to be experiencing such a miracle.

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

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

She was severely delayed in her overall development. We hadnumerous medical professionals tell us that we should be prepared to take careof her at home for the rest of her life, that she may never walk, may nevertalk, 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 openedup. I will say, we were hesitant at first, but during Gracie's first week ofschool she began to sign and started scooting as a means of mobilizingherself.  We were completely amazed!!

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

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

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

  -- Karen,Gracie's Mom