Five years ago on June 9, 2012, we safely moved 127 patients from our old hospital (then Children’s Memorial) in Lincoln Park to Lurie Children’s in Streeterville. As we celebrate our fifth anniversary, we recently caught up with some of the patients we moved on that historic day.
Emiliano “Emi” was the first patient we moved on June 9, 2012. His mom and dad share:
Emiliano (Emi) was born in December 2011 with a rare muscle disorder called centronuclear myotubular myopathy (CNM/MTM), a muscle disorder that affects approximately 1 in 50,000 newborn males worldwide, which prevents him to do just about anything on his own, primarily breathing and eating. He is immobile, ventilator dependent, g-tube fed, and requires constant oral and nasal suctioning to clear his airway.
So much has happened since the grand opening and transfer to Ann & Robert H. Lurie Children’s Hospital of Chicago on June of 2012 to Emi’s home discharge date on August 2012. Since being home, Emi has been thriving and reaching his own milestones. He currently attends pre-kindergarten but is home-schooled the majority of the time due to his compromised immune system, especially during the winter/flu season. He will be graduating pre-K and transitioning into kindergarten this fall. He enjoys books (letters in particular) and anything that rotates and lights up. He also loves spending time on his iPad and hums to the introduction of movie openings, “21st Century Fox” is still his absolute favorite. He loves venturing out and exploring the outdoors but also loves to be in the comfort of his own home. His favorite movie is “Madagascar, Europe’s Most Wanted,” “Minions, Despicable 3” and recently fell in love with the animated movie “Sing.”
Emi has learned to sit-up (with assistance) for a short period of time, he communicates with basic “sign” gestures, and has a power chair he is learning to navigate that will allow him some independence. He is currently getting physical therapy at one of Lurie Children’s outpatient clinics and will soon be starting back up with speech therapy sessions. Emi is a super sweet, super intelligent little boy who is curious about just about everything, he is strong willed and continues to beat the odds. We couldn’t be any more proud of him!
