Run For Rare Diseases

Today is Rare Disease Day! As many of you know our boys, Declan and Jude, were both diagnosed with a very rare and serious disease 5 days after birth called PKU (Phenylketonuria). For those who don’t know what this is please check out www.npkua.org. The days following Declan’s diagnosis began our journey in the rare disease world and one of our true passions from there unfolded; Advocating for PKU and other rare diseases.

Every year Andy and I usually write a post to spread awareness on Rare Disease Day. This year we have decided to step it up a notch with some pretty big goals. About 2 months post-partum Andy convinced me to start running, so I decided why not and signed up to run a 10k race. Shortly after that Andy (and some work friends) convinced me to take it even further and sign up for a half marathon! I thought he was crazy, but truth be told I’m just as crazy as he is so I agreed. I knew I had to have something more than fitness to motivate me in my training. We then decided to run the Dallas Rock ‘n’ Roll Half Marathon on March 25th to raise awareness and money for rare diseases.

Andy has ran several half marathons, but this is my first and completing it will be a huge accomplishment considering prior to this I could barely run 1 mile even in my best dancing shape days! It hasn’t been easy this soon post-partum with all of our new life adjustments, but I’m super excited about our commitment and accomplishments! 

There have been many days where I wanted to give up and not run, but it’s in those moments that I remind myself that I’m running for my boys and PKU. I’m running for better and more efficient treatments. I’m running for all of the rare disease children and adults that are struggling. I’m running for the children and adults and their families who are undiagnosed and whose futures are uncertain. I’m running for the children and adults who have passed due to lack of diagnosis and/or ineffective treatment (RIP @snugglejulian (https://www.facebook.com/snugglejulian/), just to name one brave and young soul out of many). I’m running for the children and adults whose diagnosis came too late and the damage is permanent. I’m running to spread awareness. I’m running for more research. I'm running for legislation to cover newborn screening for every disease, not just some, so everyone has a chance. Ultimately, I’m running for cures.

Please, if you can, donate to the cause. Every penny we raise will be donated to NORD (National Organization for Rare Disorders). Every little bit counts, and if you can’t donate money please spread awareness!

Alone we are rare, but together we are strong. #RareDiseaseDay #RareDiseases #RunForRareDiseases

Thank you!
-Sylvia, Andy, Declan & Jude