To say we’re “celebrating” Rare Chromosome Disorder Awareness Week is a bit of a misnomer. However, we are marking it and we are grateful that the first ever RCDAW starts today.
Thankfully we found a support in an organization called Chromosome Disorder Outreach early on. Through their research, education, and efforts to connect families who face similar struggles, we feel much less alone in this unique journey.
Individually, chromosome changes like the ones that affect our daughter are still considered rare. But we are now learning that these disorders actually may not be as rare as once believed…
