Norah Kate’s journey began with the original CREW of 3 to welcome her into this world. The CREW consisted of 2 sisters, Stella & Emma, & brother, Owen. In the coming weeks the CREW came to include her parents Josh & Emily; her extended family; her dog, Emmett;, Bunny, her favorite stuffed animal; her doctors; & all who pray for her.

Just before her 1st birthday,  Norah began to have episodes where she would pass out, go limp, stop breathing, & turn blue. It was determined that we should video events so the pediatrician could see exactly what was happening. Upon viewing the videos Norah was immediately referred to a pediatric neurologist who ordered an MRI the following day.

An EEG was scheduled & while there Norah had a major episode. Doctors were immediately called in to witness the event. Something was wrong & had to be addressed.  We were sent to have blood drawn & genetic testing began. Norah was placed on anti seizure medications to try to help.  

Weeks of waiting for genetic results turned into months & the medicine would become less effective. She had spells of dystonia, paralysis, involuntary jerking, turning blue,  eyes rolling back in her head, tremors, facial drooping, mouth automatisms, eyes dilating & turning outward, posturing, facial flushing, hands & feet becoming hot or cold and turning purple, etc. Norah endured many  visits to doctors & a multitude of tests including MRI’s, EEG’s, EKG’s, echocardiograms, labs, more genetic testing,video monitors, heart monitors, ophthalmology visits,neurology visits, tests for sleep disorders, etc.  Nothing was conclusive.  Norah’s neurologist enrolled her in the Genomics Answers for Kids program. 

In June 2021, Norah’s neurologist asked if he could present her case at a neurology conference. A team of neurologists were able to narrow Norah’s case to two possibilities.  More in depth genetic testing was done & on September 20, 2021 Norah was diagnosed with Alternating Hemiplegia of Childhood (AHC).  We were relieved to have a diagnosis but devastated that AHC cannot be cured & Norah’s future is uncertain. 

AHC is an ultra-rare genetic disorder that affects 1 in one million people.  It is currently incurable & since it is so rare there is very little funding dedicated to searching for a cure. Our family has been blessed with many donations & we are so thankful for the generosity of all who choose to help. We will continue to participate in events which will raise awareness & funds to find a cure.