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! Click here to see more photos of Emiliano.
Gia was one of the smallest patients we moved to the new hospital. She spent her first eight months of life in our Neonatal Intensive Care Unit.
Her mom Jill says, “Gia, now 5, has been a continual patient of Lurie Children’s since birth. She has underwent six invasive surgeries, correcting internal abnormalities and frequent outpatient procedures. Though she has and still overcomes challenges, she is a thriving preschooler who loves to play with her friends, enjoys doing ballet and tap and is obsessed with Shopkins.” Click here to see more photos of Gia.
Jodi, 25, has been a patient of Lurie Children’s (formerly Children’s Memorial) since she was just 6 months old when she underwent her first brain surgery for hydrocephalus.
Jodi shares, “I remember all of the excitement of move day, getting to be interviewed for the news. I think I was one of the first on the neurology floor (3 west at Children’s Memorial). I remember hearing everyone cheering as patients left. The new hospital is just stunning. I’ve only had to come back to Lurie Children’s for my last checkup earlier this year. Since move day, I’ve moved out of my mom’s house two years ago and my daughter and I moved in with her dad. I have been working full time in an accounting office for 5 years now. I got a great job after healing and knock on wood I haven’t had any complications since my last surgery! Currently, I’m getting into planting some succulents and a cactus. I still have the newspapers, the blanket and water bottle I got from move day!” Click here to see more photos of Jodi.
Maddi, 17, is a high school junior beginning her college search. Since the move, Maddi serves on our Kids Advisory Board and most recently helped plan the inpatient prom. She writes:
The day of the move went by pretty fast. Knowing that I was leaving Children’s Memorial for the last time was kinda sad but mostly exciting because I was looking forward to what the new hospital was gonna be like. I was the last patient leaving the ninth floor so when it was time to leave all the nurses had gathered around cheering saying goodbye while blowing bubbles and waving goodbye.
The commute to the new hospital was kinda cool. I got to ride in an ambulance and when we arrived I was wheeled throughout the hallways until I made it to my new room. As I was being wheeled throughout the halls, I was amazed at how big and cool this new hospital was with wall murals and interactive structures for every floor, really amazing. The new floor that CF patients were on was the 21st floor so when I made it to my room I went straight for the window. It was quite a view. The rest of the day I explored my room, which wasn’t that big so the better word would probably be TV which was ten times bigger than the old ones and had a variety of activities to do on it. Not only could you watch TV, you could watch pre-downloaded movies and games (I played a lot of Pac Man that day). If I had to sum up Move Day at Lurie Children’s in three words, the words I would choose would be exciting, smooth, and fun!
Since the move day, I have lost track how many times I’ve come back to the hospital it has been so many. I am seventeen and am finishing up my junior year of high school so I’ll be looking into what colleges I might want to apply for as well as taking the dreaded ACT and SAT. I have had some pretty awesome and fun experiences these last five years. My freshmen year of high school I went on my Make-A-Wish trip. My wish was to swim with dolphins but I also got to go on a Disney cruise with my family which was really awesome.- an experience I would do again in a heartbeat. I’ve also been on two band trips. The one during my freshmen year the entire music program went to Ireland. While the other band trip, I went on this past spring break, which was Disney World which was really awesome besides the fact that I had to miss a couple days due to driving all the way down to Florida because I had a pneumothorax which prevented me from flying.
I’ve been involved with the Kid’s Advisory Board at Lurie Children’s for about four years, I started shortly after the Big Move. The Kid’s Advisory Board function is to help make the hospital and even better place for kids, making it even more enjoyable for the kids who have to come here. The Kid’s Advisory Board is also a part of an organization called iCAN whose goal is to help families and kids with illnesses to advocate for themselves, as well as to make clinical trials for research studies better for kids. With partnering with iCAN I have gone on two trips. The first one was the iCAN Summit which was the kick off of the iCAN organization’s annual conferences in Washington D.C. so that was really fun because I got to see a lot of famous monuments and memorials, as well as visiting the Smithsonian museums. While the other trip was to help iCAN manage a booth at the American Academy of Pediatrics Convention. For this trip, I got to go to Canada which I’ve never been before so that was really great. I also got to try crab for the first time which was amazing and delicious. So my life has been pretty busy with going to the hospital for tune ups while also being in school, but it has also been wonderful by going on these amazing trips and meeting some amazing people along the way.
My years at high school have been really great, and I am excited to finish my last year of high school as a Senior, and I can’t wait for what is to come as I end one chapter of my life and begin a new one.
Join in our anniversary celebration by making a $5 for 5 gift in support of our patients and families. The James Dyson Foundation will match all donations made before June 9 – up to $5,000. Please give at luriechildrens.org/give5 #all4your1