Giuliana Lynn

Giuliana’s Story

Giuliana

” Giuliana has a gift, and that gift is her life.”

Giuliana,  Mosaic Trisomy 18,  Youngstown, OH, 8/4/2010

 

Meet Giuliana, the definition of pure perfection!  Giuliana was diagnosed after birth with full trisomy 18 based on outward markers, classic cardiac defects associated with the syndrome(not prenatally detected via utlrasound-VSD, ASD, PDA) and blood work.

Giuliana had her heart fully repaired at only 6 lbs 13 oz and 2.5 months old and because of her early repair, the first year of life was exceptionally prosperous.  She was not sickly and was just slightly delayed milestone wise, progressing almost ‘normally’.  It was at the 10 month mark that her specialist(not genetics) asked to take a deeper look at her blood work and revisited the findings. He went on to tell us that Giuliana’s diagnosis appeared incorrect and that she actually had mosaic trisomy 18.  We never retested her blood or skin, nor were we prepared to if suggested, because to us a diagnosis is merely a label.  We do not see Giuliana as a label, but as a person and have loved her equally to her siblings since the moment she arrived!

Around that time(10 months), Giuliana began to experience issues w/ food and laxative intolerance.  The next full year would require multiple surgeries, that at certain points, were life threatening.  At the threshold, we switched her diet to entirely gluten-free and rid her sensitive system of the harsh chemical laxatives that were suppressing it.  G began to flourish again.  She can now say two words, is fully potty trained, is regaining lost skills from her brush with chemical toxicity, and is becoming all around more proficient each day.

Giuliana has a gift, and that gift is her life. We are so pleased she can use her own life to inspire others to hold onto to hope that does not have to disappear after diagnosis is made.  For us, all we wanted was a living face to see because we were told that no children could survive with trisomy 18.  We now hold the honor ourselves.  Our own beautiful Giuliana is gleaming as the irrefutable face of life that the ‘lethal’ diagnosis so flagrantly can not deny.

Please visit Giuliana at her blog to read her full story and keep up with her dynamic changes!!

Click the link to go to the blog: http://trisomy