Adelaideybug

Kelly and I met in seventh grade as office aides. We spent an hour a day talking and delivering notes and eating candy bars. It wasn’t until our senior year of high school that our friendship really was sealed and thankfully while we were in different schools we were both destined for college in Boston. We did what you do in college - visited each other’s campuses, went to Dave Matthews Band concerts and always found new adventures together. After graduation we both found ourselves moving to NYC and we further did what friends do—late night talks about what we dreamed our futures would hold, laughed and commiserated about dating and spent too many late nights out dancing or singing karaoke. Life kept moving and soon there were engagements and bachelorette parties and weddings to follow. Our jobs became real and important and adulthood snuck in.  I remember the day in June eight years ago I held Kelly’s first child only hours old and she told me every detail of his birth.  Soon nights out were replaced with our children’s birthday parties and family outings. We were there for it all - we lived the best days of our lives together.

But life is not always perfect - and friendship is more than just being there for the good moments. It’s being in the nicu next to me when I delivered my son early and it’s hugging her tightly after a very late pregnancy loss.

And then in May 2016 both of our worlds came crashing down within the same week. My Mom was dying suddenly from her rare diseases, doctors not knowing what to do anymore for her while Kelly’s  8 month old daughter Adelaide was in the midst of being diagnosed with a rare form of epilepsy. I’m not sure I’ll ever understand the strength Kelly had to leave her baby girl and be with me for my Mom’s funeral and the days after but she showed up. That’s what we do for each other.

Suddenly our daily texts went from making plans to grieving alongside each other and fighting for our lives. As I mourned the unthinkable loss of my Mother and faced my own rare disease battle to ensure my own healing, Kelly was faced with accepting her daughter’s future would not be as she’d imagined it and began the fight of her life as a parent of a child with a rare degenerative disease. No topic or question was off limits we spoke freely and without judgment daily, giving each other pep talks, letting each other vent, crying together on hard days and cheering each other on with every “inchstone” forward as Kelly called them. We discussed new medications to try and questions to ask helping one another determine next steps in the rare disease battle we each lived daily.

Our lives were no longer intertwined just by our past and present but also as we fought for our futures together- a future  for me, for my son, for her daughter and for all the lives of rare disease patients who are fighting to stay alive long enough for research to catch up.

I watched in awe as Kelly became a fierce advocate in the epilepsy community - sharing her story- using her voice to raise awareness and funds to ensure research moves forward. And doing everything and anything she could for her darling Adelaideybug. She inspired my own entry into volunteer work in the rare disease community and it felt like we were both at war.

Unfortunately, as we learned years earlier when my Mom passed away, fighting alone isn’t enough. Science must move forward for lives to be saved. And then a year ago this week, days before her 4th birthday, the unthinkable happened. Sweet Adelaide passed away in Kelly’s arms at home surrounded by her loving family. Another warrior taken too soon despite every effort imaginable - science had not caught up.

Kelly is why I started my blog. She and Adelaide have taught me it is not just enough to fight my own battles everyday but that we must share our stories to educate the world. We must scream loud and often until lives are not lost because we do not know.

True to Kelly form her advocacy work has charged on even in the midst of her grieving this unimaginable loss. She has never once let a moment go by without honoring Adelaide - her life and her incredible spirit. So as the year mark approaches since Miss A’s passing it seems only fitting to remind the world of her and her amazing warrior momma Kelly who both embody strength, love and resilience and daily teach us of the power we all have to change the world… one “inchstone” at a time just like sweet Adelaideybug.

To learn more about Adelaide’s story and to read Kelly’s blog “Inchstones”, please click here.