Author: therarerunner

Spring is coming and there’s lots of updates on the horizon! First, let’s do a recap the last two months: I completed the Zooma Love Run Challenge that began at the beginning of the year – running at least 1 mile a day for six weeks.  This really helped start off the year with consistency. I…

I’m happy to report that the Miami Half Marathon was a success!  Here’s a quick recap and some photos from race day: I woke up around 4am to shower, get dressed, eat breakfast, and head out to the starting line of the race.  For breakfast, I had some coffee, a Vitaflo HCU Express20 with water, 3/4 of…

I met Kaden’s parents, Bridgett and Basil, at the very first HCU Conference in Denver, Colorado back in 2011.  That was actually the very first time I’d met any other HCU patients or parents – the beginning of what is now many connections in both the HCU community and the greater rare disease community.  The…

I first connected with Ella’s Mom, Kaiti, back in 2013.  Ella was just 5 months old at the time, but thanks to the internet and Facebook, we were able to start a dialog and have remained in touch over the years.  I’m thrilled to dedicate a mile to Ella in the Miami Half Marathon! Here’s…

The following blog post was written by Sarah and Cole Sullivan about their children Colbie and Cayle. This story makes my heart melt!  Both Colbie and Cayle were diagnosed with HCU after Colbie suffered a massive blood clot on her brain.  I’m honored to share their story and dedicate part of my 2019 Miami Half…

I met the Skeens family at last spring’s HCU Conference in Boston.    They are from Beckley, WV and their son, Landon, was diagnosed with Classical Homocystinuria at the age of 4.  Landon’s Mom, Rachel, reports that since diagnosis and the beginning of his treatment, his health has improved greatly. Landon is now in the 6th grade…

I’m thrilled to introduce two more HCU Heroes on the Miami Half Marathon team, Callum and his sister Caoimhe from Cork, Ireland.  Their Mom, Ciara, reached out to me today and shared their photos.  She reports that  both kids amaze her everyday with what they’ve achieved so far in life.  They are happy & healthy…

I met Alexa’s family at last spring’s HCU Conference in Boston, and I was very touched by their story.  Alexa’s Mom, Erika,  started noticing something was wrong with her when she was 2 years old.  She wasn’t reaching the normal milestones, but it wasn’t until she was 4 years old that they received the official diagnosis of Homocystinuria (HCU) due to her dislocated lens….

Leah was part of the team of HCU Heroes for my 2014 Boston Marathon and I’m thrilled to dedicate another mile to her in the 2019 Miami Half Marathon!  Leah was diagnosed with HCU as a newborn in the state of Alabama, and started treatment as a baby. She is B6 non-responsive and has both…

The following heartfelt blog post was written by Amanda Edwards about her sons Gavin and Zakie. Tragically, Zakie passed away a few months ago due to complications of HCU.  He was just 8 years old.  My heart goes out to this family and I’m extremely honored to dedicate one of my miles to Gavin and one of my miles in…