It's hard to believe, but we've reached the five-year point in our family's journey with Landry's unexpected rare disease and, along with that, her many medical needs.  Her CHAMP1 diagnosis came in June 2020, but the process that led us to that diagnosis began a year prior. Since that time, we've had many ups and downs as a family, a lot of unexpected and uncertain circumstances, but we've been immensely blessed with so much joy and love along the way as well.

I've always struggled with the balance between keeping those close to us informed on Landry's specific medical needs and health status in a way that creates opportunity for specific prayer support, help with physical needs, and just general updates while also respecting her autonomy and privacy on public platforms.  When I was introduced to Support Now this spring, it seemed like the perfect way to incorporate all three aspects with minimal added effort on my end. 

It's a strange feeling to find yourself suddenly in the middle of the last thing you ever imagined.  Learning that that "thing" is extremely rare, (currently) incurable, and lifelong, frankly, feels like an entirely new level of isolation and loneliness.  Along with that, there's a very unnatural and humbling aspect that comes from, just as suddenly, requiring a lot of extra help.  However, one of the most valuable lessons I've learned in our last five years is that, by allowing pride to prevent us from receiving help from others, we really just deprive the other person from the blessing of helping.

That being said, I plan to use this registry as a central place to share family updates, specifically on Landry, upcoming travel for procedures and appointments, and hospitalizations. I will also regularly update needs as they arise and change.  Out-of-state travel for her specialty care certainly adds a new element of logistics to an already complicated situation!

We are fortunate to have the continual support of so many people that love Landry and us so well.  When they say it takes a village, they aren't kidding, and I think ours, both near and far, is one of the very best. It's a great privilege to walk this rare road alongside such an incredible support system and it's my prayer that, by writing and sharing our story, we can continue to give back by providing encouragement for finding the light that only God can provide through life's darkest times.

xo - Lindsay and family