Emarie got to be the very first True Superhero, and got to ride Trax with Daddy to the Photo Collective Studios in Salt Lake. She helped her dad get a feel for the studio and equipment before the big event, and also so we could showcase our girl to recruit more Heroes 🙂
Emarie was born without any knowledge of “problems”, but had a rough labor and delivery to get here and it became clear that she has some underlying issues as it got harder and harder to get her breathing and crying. It was discovered that she had a complete cleft of her hard and soft palate, her feet and hips were not formed correctly, they quickly found a heart murmur and she failed the newborn hearing screen. More than 3 birth defects mandates genetic testing, though her parents were told by a doctor that she was pretty certain Emarie had Down Syndrome. It took a few weeks for her FISH study on her arterial blood sample, but the geneticist told her parents in the meantime that she was certain she had a chromosome abnormality, but was sure it wasn’t Down Syndrome…. it turned out to be something much rarer. 18 q deletion syndrome, so rare it doesn’t even have a name, just is called what it is. So she is missing a piece of her 18th chromosome which happens in 1 in every 40,000 births. She has endured multiple hospitalizations and over 20 surgeries including 2 total hip surgeries and over 8 surgeries on her cleft alone. But she is the most resilient little girl and nothing gets her down! Since the doctors didn’t know much about her syndrome, her parents were told that her future was very uncertain if she even had much of one. She has definitely surpassed their expectations though. They were told she would never walk, talk, understand emotion or recognize her parents, her favorite words are “I love you”, what does that tell you??
Emarie recently received a new wheelchair. It was custom made to fit her. She is already a pro at using it to get around. She is very excited about her new found freedom and loves being in her wheelchair. She also likes to run over her little brother every chance she gets, although he doesn’t seem to mind.
Emarie loves school!! When she sees the school bus every morning she goes crazy with excitement and she loves anything to do with going to school! She also loves her daddy, she is a daddy’s girl through and through!! She loves dancing, playing ball, going to the playground, anything goofy or silly and anything Disney!
“Despite everything she’s been through, she is one of the happiest kids around!! She has the ability to light up those around her as well, and everyone that knows her, cares a great deal for her.” Alisha, Emarie’s mother.
Happy birthday to the best Christmas present EVER today! Yes, she was born early in the morning at 5:08 am on Christmas Eve 2007, so she is 7 years old today!
Emarie, YOU are the inspiration we had in starting this whole project! You have given us more hope and strength than we ever could’ve imagined. We have watched you go through unimaginable pain and struggle, but always come back stronger than before. You are brave, so brave. Thank you Emarie for showing your parents and so many what a True Superhero is!
We would like to thank everyone that has purchased a True Superheroes calendar and those that have helped us get the word out about the calendars. We are excited to announce that we will be doing another event in Utah County sometime in February or March. More details coming soon. If you haven’t purchased your calendar yet, you can still order one. We are hopeful that we can raise enough money for another event in Salt Lake City this year. We also have a new book available that features all 23 of our Superheroes.
BUY ONE GET ONE HALF OFF. USE CODE PIC4U AT CHECK OUT.
Thank you for your support.