A Rare Disease Day Tribute by Rebecca McWilliams, Mom to Kieran
In my wildest dreams, I never thought this day would hold such profound meaning for me. Yet when your beautiful child is born and swiftly diagnosed with a disorder that randomly affects one in 15,000 births, Rare Disease Day immediately becomes a permanent part of the fabric of your life.
It’s hard for me to imagine that there was a time when I had not heard of Prader-Willi syndrome. It seems nearly impossible that I lived so much of my life completely ignorant of something that is now such a huge part of my every day.
When I first wrote this blog, Kieran was 6 years old. Now, he is almost 16! Have the years flown by? They certainly have.
Has each day been easy?
Definitely not.
Is Kieran still rare in the most beautiful, infinite, and miraculous ways?
Without a doubt.
In many ways, the fabric of Kieran’s life, and of our lives, has morphed into something very different. These are changes that naturally come with the passage of time; a brother who’s left for college, another brother who’s entering high school, the unimaginable losses of dear loved ones, the addition of a beloved family pet, and the multitude of other life occurrences that take place over the course of a 1o year span. And yet while there are many things about 16-year-old Kieran that are vastly different than the 6-year-old version of himself, all of the wonderful things that make him the beautiful, rare being that he is, are still exactly the same.
When my son Kieran was first diagnosed with this rare disorder, I made a promise to him that I would never let it define him. And to this day, it certainly has not, nor has it held him back from trying and/or doing anything his peers have embarked on.
Kieran is a true gem, a diamond in the rough that holds wonder in every complex facet of his being. He is still, at 16, simply 1 in a million. While his genetic make-up hasn’t changed, his sparkle, shine, resilience, bravery, and perseverance have continued to grow by leaps and bounds.
With the passing years, Kieran’s rareness has aged as well. He has risen to new challenges and has accomplished more than we ever could have thought possible. He has grown in incredible ways; both physically (yes, he is now taller than me!) but emotionally and academically as well.
Kieran still possesses a rare smile that can light up a room (with even straighter teeth, after years of invisalign!) and opens up his arms for a long, rare hug when he knows you need it most.
Kieran’s perpetual kindness, endless empathy, unlimited curiosity, eternal gratitude, and boundless loyalty continue to touch all of those around him and highlight just how rare he is.
Kieran still possesses the rare quality of simplicity; finding the utmost fulfillment in the small things that matter most, such as friendship and family, while genuinely believing that he’s the luckiest kid in the world for having such loving forces in his life.
Kieran’s constant reminders about how proud he is of those he loves (not a day goes by that he doesn’t praise me for being the best mom in the world!) continues to define his rareness as well.
Kieran’s willingness to keep pushing through tough moments, whether it’s embracing new and unexpected challenges in school or conquering weekly swim lessons after many, many years of trying to master the skill, is still surely a rare quality
When I first wrote this blog 10 years ago, I stated, “There is no doubt that Kieran is both literally and figuratively a rare and beautiful being.” Not only is this still true today, but what’s even more apparent is that Kieran’s rareness is in no way defined by a genetic disorder, but rather the unique person that he has grown into and continues to become.
Just like when he was 6, I often catch myself looking at Kieran and thinking about all of the phenomenal things that he’s accomplished over the past (almost) 16 years. I can’t deny that there is a bittersweetness to watching Kieran grow up. These days, he recognizes that life can be hard for him at times, that there are moments and days when the world moves a little too quickly for him, and that he has to put in more effort to learn new things than most others around him.
And yet, despite all of this, Kieran continues to march onward and to even stop every once in a while to reflect on how to be the best possible version of himself; if this isn’t a rare quality, what is?
10 years ago, I wrote the words below, and these still hold true today. In fact, regardless of how much time passes, I am certain that these sentiments will never fade:
“While I will continue to fundraise for treatments to help Kieran overcome the many challenges that are thrown his way, I will also spend all upcoming Rare Disease Days celebrating him and his rareness, for without it, Kieran would be a very different soul. And while I would give absolutely anything to eliminate his daily struggles, I also want to keep him just the way he is."
Thank you to FPWR for your steadfast work at finding treatments to help mitigate the symptoms of Prader-Willi Syndrome, and for continuing to honor all of the rare and beautiful beings, such as Kieran, who are benefiting from your tireless research.
