About Blaire
Blaire was born in November ’22 and until about 9 months there was nothing deeply out of the ordinary regarding her infant development, she was hitting most developmental milestones - an absolute joy of a baby! Blaire was adjusting to life earthside while her sister Ellie was adjusting to not being the solo star of the show anymore - she had to share the stage now ;)
Around 9 months things started to change from a gross motor perspective for Blaire and before we knew it weekly PT visits followed by visits to the neurologist, a brain MRI and genetic testing were all done in a few short months, which ultimately culminated in a deeply shocking and devastating Rett Syndrome diagnosis right after Blaire’s first birthday in November ‘23.
Rett Syndrome is a devastating and very complex disorder that profoundly impacts nearly every aspect of a child's life. It affects their ability to walk, talk, use their hands, eat, and even breathe comfortably. Imagine combining the symptoms of Parkinson's, cerebral palsy, epilepsy, autism, breathing difficulties, GI issues, and anxiety all in one body - that's Rett Syndrome.
As her parents, Rob and I have been on quite the journey over the last almost year filled many complex emotions as we continue to process the gravity and significance of Blaire’s diagnosis and the impact that it will have on her and our family. While Rett Syndrome's full impact on Blaire will unfold over time, one thing remains certain: her beautiful, bright spirit shines undiminished. Blaire continues to be our daily source of strength and inspiration, reminding us of the power of hope and unconditional love in the face of adversity. Things that continue to ground us daily - Blaire knows how very much we love her every single day and that there is zero question that she will be included in everything that we do, regardless of how complex that may be in the future. Inclusion is key!
As the center of Blaire’s ‘hive’, we will continue to fight and advocate for her every single day so that she can live life to the fullest! Blaire understands so much more than she can communicate - and now through the power of adapted iPads and an innovative eye gaze device, she will be able to tell us so much more as she learns and grows! Blaire’s journey has only begun and we are committed to supporting her in every step of this adventure, together.
There are two wonderful organizations that have been crucial to supporting Rett families just like us, Rett Syndrome Research Trust (RSRT) and International Rett Syndrome Foundation (IRSF). We could not be where we are today without the connections and support that they have provided us as we navigate this journey. We encourage you to read up on the work that these two respective organizations are doing to help broaden the genetic therapy landscape so that we can see more curative medicines in Blaire’s future along with the other thousands of people impacted by Rett Syndrome.
