Gratitude

The start of 2021 is beginning with nothing but positivity, joy and a strong belief that miracles happen every day. 

Rather than list a slew of resolutions that may or may not be feasible (as COVID taught us),  I have decided to start the year with simple gratitude. 

I have found a large amount of peace this year because I joined an indestructible force of support in the rare disease community.  The rare disease community consists of determined parents focused on helping not only their children, but a multitude of people.  None of us asked for this role, in fact, most of us still grieve that we were forced to take this role.  But every single one of us decided that inaction was not a viable option.  Pediatric rare disease is an injustice beyond comprehension so we individually stepped up to take on the world. 

The Roller Coaster of Emotion makes Six Flags look like a Toddler’s Rocking Horse. 

When times are tough, I can always find support in my fellow rare parents that have become best friends from all over the world.  We ask each other how we are doing and no one expects to hear good because we embrace authenticity, vulnerability and truth.  We celebrate each other’s wins and mourn each other’s losses.  I have at least 50 children that I fiercely love and make me smile every day.  

I never could have known when Maxwell was diagnosed that I would be writing today bragging about my friends.  This is a club you would never want to join, but dang, it is rewarding, purposeful and supportive.  I am inspired every day by these beautiful souls.

For everyone reading this, I hope this year is filled with peace and gratitude. Thank you so much for your continued support of SLC6A1 and I am so excited for the wonderful year that lies ahead.

The Four Amigos of SLC6A1