By: Courtney Hamilton, sister of Isabella McFee

As I finally tightly squeezed my siblings’ goodbye, my parents asked once more “Are you sure you don’t need anything?” I could feel tears welling up in my eyes. It was time for me to go live my life at college and do things I have always dreamed about doing, plus the whole no parents, no strict rules, being the boss of myself thing sounded pretty cool. However, the dooming thought I have always kept deep inside of me about leaving home finally came true. I was excited but scared as any college kid but knowing I was leaving behind my comfort place with all my friends, my parents, and my six siblings left me troubled.

As I made my decision of where life would take me after high school, I always knew I wanted to work as a genetic counselor to help families understand genetic issues and coping mechanisms. This isn’t exactly a known profession but to me, it is close to my heart. My sister, Belle, has a rare genetic disorder, called Smith-Magenis Syndrome (SMS). It became very apparent to my parents at her young age that something wasn’t right, she wasn’t developing like a child should, after nine months of panic, emotions, and questions my parents met with a genetic counselor who was able to fully identify my sister’s disorder and help my parents through the hurt of knowing their baby wasn’t “normal”. Very quickly I was born and my sister and I have been inseparable. She has taught me a lot in this life and I knew leaving her in college would leave me feeling lost. I felt guilty if I left her because she would have such a difficult time understanding but I wanted to be able to do things any normal teenager would do and pursue something that one day could help children like Belle. I finally settled on staying somewhat close to home, so that a weekend drive wouldn’t hurt. I moved two hours South from my hometown, Pickerington Ohio, to Cincinnati to study biology at Xavier University.

It was the first month of school, I had finally met some of what are now my best friends and I was finally grasping classes and a normal routine. I missed home but I felt like I could conquer the world. My sister called daily from my mother’s phone and the first thing she always asked was “When will you be back? Are you busy at school today?” and the responses never changed “Of course I am busy! And I am not sure when I will be back yet!”. Our calls were seemingly repetitive, then one day my phone buzzed as I was in my evening biology lab, the air smelled like formaldehyde and students were raising their hands to be checked off for dissecting the rat. As my phone buzzed, I blankly stared and thought it was not time for Belle to call me, my mom knew I was in the lab. So I pried my gloves off and declined the call and messaged my mom “I will call you in 10 minutes, dissecting a rat, how fun!”. I rushed out of the lab because I knew Belle would love to see the photos, I called my mom and she picked up almost immediately. Her face is swollen from crying as I hear beeping from what sounds like a hospital, and I remember feeling my heart sink rapidly. I start asking a million questions but my mom has no response. Belle had gone to watch my brother’s soccer game, and she quickly became short of breath, her face turned green, and she fell.

As I quickly felt guilt and pain, I needed to get home but I did not know how I was going to afford to miss any class in my first month of college. My mom eventually talked me down from trying to drive home and then came back the following day as there was nothing I could do differently from home or school, especially regarding the fact we were in a global pandemic and visitors were restricted. After restless nights of Belle being sick, it became very apparent that whatever was wrong was far more serious than anyone had thought. Her organs were starting to fail and the only thing keeping her alive was life support. I finally decided I couldn’t wait any longer, I wanted to be with my family and see Belle for whatever it took. They quickly decided that she needed to be life-flighted to the Cleveland Clinic for open heart surgery as the infection they found had spread and attacked her heart. That day, I finally got to see my sister after 3 weeks, which is the longest time we have ever been apart.

I walked into the room and choked back tears, I hardly could recognize her, she looked so sick. I quickly ran to her and knew she could hear me, my voice cracked as I said “Belle Courtney’s home!! Look please wake up for just a second”. Her eyes rolled open and she signed to me “Excited”. I remember feeling a sense of normalcy and that if she could get up she would tackle me and do what she does best, give me an extra tight hug, where I feel safe. It was time to say goodbye as the paramedics from the helicopter were coming in and immediately a cloud of nausea overtook my body. Even Though I know how strong Belle is I quickly knew this goodbye had to mean the world to me because there was a chance that she wouldn’t make it home. They took her away and all I could feel was guilt that I had been gone from her, I felt alone and I started to make myself sick at all of the thoughts of what was to come. I remember watching her get on the helicopter and fly away and I knew she would be hugging me soon.

My mom met her at the hospital and my Dad and I went home to hold down the fort, as I have five other siblings, and we wanted life to continue as normally as possible. That night Belle was taken in for heart surgery, she was not going to make it through the next day without it. The doctor’s words blurred in my mind as he told us over the phone “She has a 25% chance to make it off the operating table, and another 25% for the recovery after” She had mountains to climb. I often knew the odds were against Belle and somehow she always seemed to flip them.

After twelve long open-heart surgery, Belle was able to come off the table. For fifty days after that Belle battled and life wasn’t easy. I returned to school a week after she was off the table. We continued to Facetime. And at the time I felt more relieved to continue my studies, she was getting better and better by the day. After what felt like an eternity, Belle was able to return home happy and healthy.

Life has now moved on as normal as it can be. Belle has adapted to life with me away but we both cherish our time together even more than I ever have. The most important thing I have learned is to never take your time with anyone for granted, to enjoy every moment, and to hug your loved ones a little tighter.

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Do you have a sibling with Smith-Magenis syndrome? We would love to share your story with our SMS Community. Share your story to info@prisms.org.