“We had to get ready because I was going on my very first trip to …DISNEY WORLD”
Jacqueline Saget-Walker, Trisomy 13, 6/9/2014 to 12/4/2014, Thornton, PA
On the evening of Monday, June 9, 2015, I was born. My mommy and daddy had no idea that I would be bringing an extra something special into the world! The doctors thought that I had an ASD and that it just might close on it’s own after I made it into my mommy’s arms. My mommy had her blood drawn for a test they called the “Harmony” test to check for Trisomy 18 and 13. I was determined to make life full of surprises soon shhhhhh I hid my Trisomy 13 from her! After I was born, I was breathing fine on my own. YEP, great big breaths and my heart was functioning fine. I did have some issues with my blood sugar and jaundice so I had to stay in the NICU while my mommy went home. Uuuggghhh then the doctors stuck me and the jig was up man! They told my secret. I am an impressive full Trisomy 13 miracle! I met my favorite eye doctor during my stay who told my mommy that I was born with something called Peter’s Anomaly of the eyes where my lens did not generate right, so I would need surgery ( YIKES!). The doctors in the NICU didn’t know what to make of me and they told my mommy that they had more questions than answers about me (I loved to do things MY way and keep em guessing!) They really scared my mommy and daddy with all of the stories they told them about me, but I did my best every chance I got to reassure them that I was NOTHING like what they said. We finally went home 17 days after I was born WHEW! I wanted to meet my brothers and hang out with my sister and niece some more. My mommy made some of the best milk for me! I really enjoyed it! I did NOT like the surgeries but I had to have 4 of them within one month to correct my eyes. I had my tear ducts opened and cleaned, my lenses removed AND then had to have my retina’s attach with file bubbles. TALK ABOUT A BUSY schedule! But a princess had gotta do what a princess had gotta do!
My eye doctors were shocked at how well I did with he surgeries and I ended up with my very first AWESOME pair of purple glasses! We had to get ready because I was going on my very first trip to …DISNEY WORLD (I had to go see my castle!). I met Mickey, rode It’s a Small World, went swimming in a bikini, went to the Zumba® Fitness instructors convention, and even rode the Buzz Lightyear ride! The summer was coming to a close and I started not to feel so hot. My heart was doing really well, but I ended up getting a respiratory infection 🙁 My mommy tried so hard to take care of me at home with the help of my Nana but, things just got worse. I took a ride in an ambulance to our hospital and that is where I spent the rest of my time. I came in with 2 viruses but ended up catching 7 additional ones in the hospital. My family was so scared and sad, but I tried to comfort them as much as I could. I had some really great nurses and doctors who listened to my mommy and tried to help me. I knew that Jesus was calling me to come home even though my mommy did not want to let me go. She was brave enough to walk me back to Jesus with all the love and kisses I could stand (she did slobber on me..but I did not mind!). I lived a full and remarkable 178 days here on this earth and I will not forget any of what I learned and taught. My mommy and my sister have asked me to look out for and watch over my trisomy cousins who come to join me and that is what I do. I love my family and they are helping to touch other trisomy families in NICU’s by giving them some love from me to carry with them. Thank you for reading my story, but it is not finished, I live on, TRISOMY STRONG in the hearts of everyone who cares!
- Diagnosis: Trisomy 13
- Location: Thornton, PA, USA
- DOB: 06/09/2014
- DOD: 12/04/2014