february 29th; rare disease day
over 350 million people in the world live with a rare disease.
50% of those are children.
30% of those children don't survive childhood.
today we come together to recognize the incredible resiliency and courage of the rare disease community. it’s a day to acknowledge the challenges we face and the unwavering faith that keeps us going.
in this community we know we aren’t alone - even on the worst days that hold a cloud of isolation over our heads.
we find peace, support, and inspiration to keep going from others walking alongside us.
together, we are stronger.
together, we can raise awareness.
together, we can drive research.
together, our stories, experiences, and voices matter.
together, we can create a world that is more understanding and inclusive to those living with a rare disease.
every day, we face unique obstacles and navigate through uncharted territory but through it all we find courage within ourselves and draw strength from the compassion of those around us.
we recognize all living with a rare disease, caregivers, advocates, and medical professionals who work tirelessly to care for rare.
on this rare disease day, we are united by our strength, our resilience, and our unwavering hope for a brighter future.
———
our story is not like most.
it’s full of unexpected mountains without a map.
one we didn’t know we would be navigating through,
but grateful to Him that we are.
a chromosome 14 deletion, “we’ve never heard of it”
including PACS2, “what’s that?”
common responses we get, ones that hold really heavy answers and the silence of none…
but through all that we have learned so far, we know this for sure - hudson is the best teacher and we trust the path He has created for him.
as his parents, we pray you always seize the day. no one is immune to the rare life happening to them, and being so lucky to have hudson in our lives has shown us to always offer grace, and choose joy every single day.
