Mia Joy was born into this world on a cold January morning.  My husband and I, along with our 2 older girls, were thrilled to say the least.  However, our elation was short lived, replaced by an ambiguous fear of the unknown.  “Have you noticed that Mia doesn’t look like your other two children?”  “What does that mean?”  “We’ll know more when the geneticist gets here.”

That conversation propelled us on what has been a 10-year journey of searching for answers about what we have come to understand as a very unique medical condition.  After undergoing every available genetic test and exhaustive efforts by our local medical community, we were finally referred to the Undiagnosed Network.  However, even the resources of the UDN apparently fell short at identifying Mia’s condition.  So at the age of 7, we were told that Mia’s condition would likely remain a mystery.  We therefore resigned ourselves to the reality that she was indeed writing her own story, a story with a single protagonist. 

However, in July of 2024 we received the astounding news that a diagnosis had indeed been found, from a genetic lab outside of the UDN in the UK.  Mia was one of the first of these children to be identified and confirmed.  This news was received with a plentitude of mixed emotion, excitement colored by a not insignificant amount of anxiety.

We quickly connected with the other ReNU Families via the international Facebook page and were shocked by the similarities of these children across so many varying ethnicities.  The faces, noises and movements were all SO familiar, so much like our Mia!  We couldn’t believe that this condition, which had been “hiding in plain sight,” had unearthed such a community of similar children! 

Before a name was even chosen for this condition, both my husband and I had independently looked at the identified mutation [RNU4-2] and read “renew.” It was always “renew” syndrome for us – in all the ways that Mia’s life has provided renewal within our family through the love she calls forth from us, to the hope this diagnosis brings for Mia’s future.

Has this journey been easy? - not in the slightest.  However, we as a family have adopted a habit of finding JOY in it all.  Before her birth, we gave Mia the middle name of “Joy” after my husband’s late grandmother.  Little did we know that Mia, even with all her disabilities and challenges, would produce a joy within our family as vast of the ocean. 

We look forward to continuing our journey, no longer alone, but united with this tremendous community of families that share our unique stories, fears, hopes and enduring love for our very special children.  To God be all Glory!