Troy

Troy ~ Partial Trisomy 13 ~ Born:  June 8, 2011

"It's a boy!" Those happy words were a heavenly comfort as I held my wife's hand during her emergency C-Section. She squeezed my hand as we heard Troy cry for the first time. We had been in the hospital since the day before, and the baby had been having trouble inside after they induced labor... so to hear his voice, healthy, made us both so relieved and happy. The doctors were surprisingly quiet, however. I'd planned on cutting the cord after debating it for a couple of weeks. But they never brought the baby to us. The doctor came over and said "Before you look at him there's a few things I need to tell you...." He gave us a list and said that he'd like to do an ultrasound, an xray, issue a genetics test. The doctor looked like a mad scientist, thrilled that he hadn't seen anything like this before. As soon as I saw Troy's face, though, I thought what is this doctor talking about… The baby looks great... he's cute! I touched Troy's hand, still covered in that cheese stuff that baby's have,and he grabbed my finger and looked up at me. We stared at each other for several seconds. It was amazing.

The day after he was born, the preliminary chromosome tests indicated that Troy had Partial Trisomy 13, and Partial Monosomy 7. I googled this information and discovered quickly the seriousness

of this syndrome. It felt unreal. And then I discovered this site, and I realized there was hope. I realized that despite the statistics there were survivors, and more importantly there were happy lives... some shorter than others, but no less precious. We were hopeful because Troy didn't have any problem that put him in immediate danger, just lots of concerns. We met with the geneticist a month later for the official result. It was confirmed, Partial Trisomy 13. The part duplicated was significant, although not complete. The monosomy 7 was trivial he said. He talked about how well Troy was doing, and that he is the best case of Trisomy 13 he had personally seen. This made us so happy to hear that. And then he told us for the next twenty minutes that he did not expect Troy to survive for a month or two. He said that he would probably get complications with his heart or lungs. I told him I was aware of the statistics, but look how good he is doing. He doesn't have anything that should shorten his life, I said. He disagreed and said just having Trisomy 13 was reason enough. My wife and I left the hospital overwhelmed. We went out the door and headed to the car. Halfway there I looked over and saw a dove sitting on the hand-rail, with a twig in his mouth. It looked like the symbol of peace. I walked closer and closer to him, and the dove was not afraid. It nearly let me touch him before it flew away. Immediately a Bible verse came in to my head, "Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." Despite the diagnosis a moment ago, I smiled... knowing God is in charge. Jesus is with us and He knows what is going on.

Troy is now over 2 months old and going strong. Instead of deteriorating, he is thriving! He was born

4 pounds 6 ounces and is now 8 pounds 8 ounces... nearly double. His pediatrician says that despite being Trisomy 13, he is doing great. He does have trouble breathing at times, trouble eating, has kidney swelling and a Tethered Cord. However, his lists of problems a month ago were twice as long and twice as serious, including a hole in his heart that now seems to be healed. I thank God for the serious conditions that have simply gone away without surgery. God performs little miracles in people's lives everyday... the best miracle He gave us, was Troy.

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 BACK TO LIVING MIRACLES PAGE

Katherine Sloanne

 Katherine Sloanne

Partial Trisomy 13

Katherine was diagnosed prenatally with partial T13 and tetralogy of fallot (CHD). At birth we learned she had a cranial defect called craniosynostosis, kidney issues, eye issues (called Coloboma), a tethered spinal cord, hypothyroidism, and seizures. She also had a g-tube placed at 6 weeks-old. She spent 52 days in the NICU.  She has had open heart surgery, cranial surgery, spinal surgery, and numerous cardiac catheter procedures.

Today Katherine, or Kate as we like to call her, is doing well. She is healthy, though she recently had a reoccurrence of seizures that landed her in the PICU a few times earlier this year.  She is getting stronger all the time. She is progressing in physical therapy and she has moved on to using a stander to increase her ability to bear weight on her legs, and we hope to try out a walker/gait trainer soon.

Kate became a big sister in February this year. Her little brother Ian is healthy and developing on track. Kate is simultaneously interested and annoyed with her little brother’s existence, which is typical 2-year-old behavior.  Kate will officially turn 2 in May and we are so blessed to have her in our lives and look forward to many more birthdays.

Bethany Lafferty, mom to Katherine

bab5251@yahoo.com

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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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

BACK TO LIVING MIRACLES PAGE