Jillian

 Jillian

Partial Trisomy 13 ~ Age 6

In honor of Trisomy 13 Day, I was asked to share Jillian's story.  This is from my heart of hearts.

Jilli was born 4/21/07.  I knew nothing of her condition when she was born; but , when she was I knew something was very very wrong.  So many tests where done. A Trisomy 13 marker was present.  "Do not search this on the internet," I was told by a genetics Doctor.  I did.  Heart break. Devistation.  Please God, don't take her from me. I cried beside her for a long time.  How can I tell her sister? How can I tell my family? She had surgery at one month old. so many Doctors were coming in and out of the hospital.  Here is this label, here is that label. It seemed she was leaving me little by little.  Then some results came in saying she was partial and not full Trisomy.  What does that mean? I was told she would never smile as she looked up and smiled.  There is life here, they cannot tell me that there isn't.  So, I took her home and we started therapies. OT, PT and speech...everything I could get her.  At 9 months she had cranial reconstructive surgery.  They removed and reformed her forhead.  She had this beautiful zig zag scar across her head from ear to ear. A little boy in Walmart said it was her CROWN! You see, she is a princess too.  The days followed, the months followed and then YEARS followed.  Jilli goes to school! Jilli loves her family! Jilli loves her teachers, friends and pets.  She walks, turns on her lights and opens doors.  Best of all, she smiles all day long.  She is pure. Simply pure. So when you see my posts about her and the prayer requests for "my" other trisomy children.  Please understand, you are seeing my heart of hearts loving and fighting for these children.  My goal in this world is to change this label of trisomy.  They are not incompatible with life as the medical books say.  If given a chance, they change lives even if it for the briefest moment in time.

Jillian's mom Kara is the Administrator of Research and Support Services for Living With Trisomy 13

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa

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