As the sixth anniversary of Tori’s death quickly approaches (Sunday), and with the passing of my friend’s daughter Calliope yesterday, I have been reflecting a great deal on the beauty of the Leukodystrophy community.
None of us chose to be here – and we wish we could leave.
None of us ever thought we’d lose a child/children to a rare disease we’d never heard of before.
And yet, we’re thrust together after our child’s diagnosis day as a community of grieving people trying to move forward and make sense of it all, however we choose to do so.
While we all approach it differently, we all have one thing in common: out-of-order death and loss. Deep loss. And from that loss comes a beauty rarely seen in this world. We help one another, share wisdom, listen, join together in an attempt to help others not endure all that we have. We come together, despite our differences, because we’re reminded of the only thing that matters – love.
It is from these great losses that incredible advances in research have been made possible. The unquenchable passion, unmatched determination, and unimaginable creativity that comes from these families is inspiring, to say the least. For many it’s an outlet for their grief (the book Harnessing Grief by my friend and colleague Maria Kefalas is an excellent resource on that). For others it’s their newfound life’s purpose. For most (like me) it’s a combination of the two. I’ve seen people with such varied skill sets and experiences joining together to have an incredible impact – brought together by their common loss.
There are struggles within the community, of course, because that same grief brings challenges as we work together and overcome differences. But at the end of the day, we’re all on the same team, all working toward a day when every child born with a Leukodystrophy can have an early diagnosis and treatment.
I’d do anything to have Tori back. I would have given anything to have had her screened for Krabbe at birth. But, in her absence, I am doing the next best thing: I’m using my unique skills, talents, experiences, and education to make an impact in her honor. I’m doing what I can to see changes made that save lives, changes that empower parents with the opportunity to treat their child – an opportunity we were never given. I’m doing what I can to prevent others from the trauma and heartache we and too many others have endured.
I can’t imagine doing anything else, and I can’t imagine journeying with anyone else.
Today I’m especially grateful for the life that my friend Maria Kefalas has chosen to live because of her precious daughter, Calliope (Cal). Maria started The Calliope Joy Foundation and Cure MLD and has raised nearly $1 million for leukodystrophy research and support for families.
Maria is the reason I have a “job” and have the opportunities I have been given through the Leukodystrophy Newborn Screening Action Network. She saw the work I was doing and empowered me to do even more. Together we are accomplishing so much in honor of our daughters and I’m forever grateful.
If you’d like to donate to Cal’s memorial fund (to help further leukodystrophy research and support families), you can do so here.