Meet Sophia, the Warrior Princess.
1 in 10,000 babies are affected with an abdominal wall defect. Born with a giant Omphalocele, little Sophia was the “1” in that statistic.
Sophia’s organs, with the exception of her heart and lungs, were born outside of her body. When discovered at her 15 week prenatal appointment, doctors encouraged Sophia's mommy Katie to terminate. But Katie knew differently – if Sophia was willing to fight, so was she.
Since birth, Sophia has endured 4 major surgeries to attempt to put her organs back inside of her body. Attempts to repair her airway, put in her trach, and even open heart surgery on her tiny heart to repair the hole in her heart. Sophia was paralyzed and in a medically induced coma for four months. This little warrior suffered a mini stroke, causing her to have right sided weakness and 6th nerve palsy – leaving her with an even harder fight and adorable little glasses.
To Sophia, life support is part of everyday life. After an exhausting day of breathing on her own, her lungs get tired and she needs some help. So for 12 hours every day, a ventilator helps Sophia to breathe.
Rewind to Sophia’s homecoming from the hospital. Sophia was 10 months old and not too different than a newborn. She couldn’t hold her head up, she required around the clock care, but still she championed on. She learned to sit up at 11.5 months old, crawl at 14 months, and walk unassisted at 2 years old.
Sophia’s big sister, Layla, is her best friend and biggest cheerleader. At just 8 year’s old, Layla is a rock to Katie – a single mom who loves her kids with every ounce of her energy and then some. Layla and Katie lived together at the Ronald McDonald house for the first 10 months of Sophia’s life. Layla spent 10-12 hours a day with her mom at the hospital visiting and cheering on her baby sister. She held her mommy’s hand, assured her all would be okay, and championed with her through the brutal waits during major surgeries. A nurse like her mom, Layla is proud to know how to change Sophia’s trach and suction her.
Eating doesn’t come easy for little Sophia either. For her first 2 years, she was unable to eat or drink by mouth and received all nutrition via her gtube. At 2.5, Sophia can drink small amounts such as applesauce and yogurt, but still requires to be connected to a feeding pump 3x a day to ensure she receives proper nutrition.
Yet still, Sophia warriors on. She is a beautiful, ‘normal’, 2.5 year old who loves to run, jump, and play. While she cannot speak, she has learned to communicate with sign language. This little champion knows over 300 signs! You will catch her playing Ring around the Rosy or doing the Hokey Pokey. She loves purple, red, Minnie Mouse, and toddler songs. She loves life.
On March 10, 2015, Sophia is set to have surgery #8 at the Ann & Robert H. Lurie Children’s Hospital of Chicago. Her surgeon is determined to close her abdominal wall as she was missing 30% of it due to her birth defect. Currently Sophia’s organs are in the wrong place and her liver is centrally located, unprotected by her rib cage like yours and mine, leaving her at risk for great injury.
This surgery means more fight for Sophia, but still she will warrior on. She will require increased time on her ventilator due to added pressure on her lungs. She will come out of sedation paralyzed. Only time will tell how Sophia’s lungs will handle the pressure. Luckily – (if you’d ever think you’d say such a thing when referring to a trach!) – Sophia has a trach which ensures she can be easily attached to the ventilator as often as she will need it.
Today – this beautiful family of 3 needs our help. Katie – a single mom, school nurse, and an amazing caregiver – assumes a difficult role often shared among 2 parents. Unfortunately, she has utilized all of her sick and vacation days due to Sophia’s surgeries and hospitalizations. Her desperate attempt to tap into the emergency sick bank was denied despite an additional request in front of the board. See, it is Sophia who is sick, not Katie, they say. But we know. We know Katie needs to be alongside Sophia, championing on with her warrior princess.
We know she needs our help. Because remember, if Sophia is willing to fight, so is Katie. And if Katie fights, her community will fight alongside her, helping any way we can.
We are raising funds to help with rent, groceries, bills, Sophia’s medical care, and most of all – to help remove just one small burden from Katie while she fights alongside her daughter. We thank you for every dollar you can give and for spreading the word. We promise Sophia will continue to fight and love life as she has been doing since day one.
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