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A Future Worth Hoping For: Living with Prader-Willi Syndrome

P4P presents our newest guest blogger, Alexandria Brown. 

When you think of making doctor's appointments, what comes to mind? Maybe the occasional once or twice a year checkup. Well that, my friend, sounds like rookie business to me. You see, growing up, I saw a multitude of doctors. So many that I would need my fingers and toes to count them all. I had to see all these doctors because I have a clinical diagnosis of a disorder known as Prader-Willi Syndrome (PWS).


Growing into Resilience

As I got older, doctor appointments became very frequent excursions. Typically, my mom would leave with tear-filled eyes and a gut feeling of uncertainty. Eventually I, too, began to understand her fear of the unknowns and what ifs. When seeing various medical professionals, they would inevitably present me with the dreaded statement “There is very low possibility you will be able to accomplish....” then would fill in the blanks with various scenarios. But, as time went on, those scenarios began to change – because my list of accomplishments actually began to grow. No matter what odds the doctors threw my way, I always chose to defy them. I guess you could say I've had to develop my sense of resilience.

I made a choice to not be afraid to ask for help ... with assistance I graduated on time with my class.

Getting to where I am today hasn’t been easy for me. For instance, elementary school through high school I had an Individualized Educational Plan (IEP). During my sophomore year of high school, when the idea of a ‘five-year plan’ was mentioned, I did not like the thought of that at all, because it felt too overwhelming.  However, knowing what could happen if I didn’t start to work hard, I began making more of an effort to make sure I understood completely what was going on at school and with my classes. Some classes, such as math, were harder for me than others. Because of that, I had to make sure I was able to fully grasp the concepts. I also made a choice to not be afraid to ask for extra help. With additional assistance, I ended up graduating on time with my class. 


Mastering Life Choices

Fast forward a few months, I went on to attend the local junior college. It took me five years but I received my Associate’s degree in social and behavioral sciences. Now I’m 25 years old and about two years away from completing my Bachelor’s degree in Family Studies and Child Development. Who knows, perhaps a Master’s degree will be in my future.

A Self-Advocate, Advocating for Others

At this time, another aspect of myself I’m trying to work on is continuously advocating for myself, even though it’s not my favorite thing to do. As I’ve gotten older I have had to learn that no one else knows what I need to succeed unless I tell them. Being the one to step up to the plate and talk to those who can help me is a nerve-racking task. However, within this past year not only have I started to advocate for myself, but on behalf of others who have PWS.

I have overcome many obstacles.  I know there are even more to come. There will be more times than I can count where I will have to swallow my pride and ask for help even on the things I fully believe I can handle on my own.  Living with Prader-Willi Syndrome is an exceedingly difficult journey and each day brings its own set of challenges. But living with this syndrome has also made me tenacious, strong-willed and hopeful.

As one of my favourite quotes from Beau Taplin says: She was unstoppable, not because she did not have failures or doubts, but because she continued on despite them all.    


P4P is grateful to Alexandria for sharing her personal story. 

Connect with Alexandria on Facebook: A Life Well-Loved - Living with Prader Willi Syndrome.

Learn more about Alexandria's journey on Instagram.       

Learn more about Prader-Willi Syndrome (PWS):  Ontario Prader-Willi Syndrome Association and Foundation for Prader-Willi Research Canada 

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