Daxton was born on Christmas Eve 2020.  After a rough delivery we enjoyed his first Christmas snuggling in the hospital.  We were so excited to go home on the 26th to start our new life.  Just after midnight on December 26th, the nurse came to get me to be with Daxton.  He was having some type of spell/episode.  When I got to him he was laying completely limp on a table with his eyes wide open staring at the ceiling.  He was airlifted to Rochester in the middle of the night and we spent the next 5 days in the NICU.  After a CT scan they found that he had two skull fractures and some bleeding on the brain.  He was hooked to an EEG for several of those days and everything looked great.  They assumed the spell/episode was from the fractures and bleeding.  We were told that his injuries were from the rough delivery and they would heal on their own.

One morning in April 2021 before going to daycare he was laying under his play mat.  I noticed he wasn't turning his head, it appeared to be stuck to his right.  His eyes were also looking all the way to the right and shaking back and forth.  I immediately thought he was having a seizure.  I reached for his paci and tried to give it to him to see if he would take it, he did and he looked at me as if nothing had happened.  A week later the same thing happened but it lasted a lot longer.  We went to the ER and were sent to Rochester.  His EEG came back normal but they decided to treat him for seizures.  We left with daily medicine, rescue medicine and a plan for if he would have another "seizure".  He continued to have these "seizures".  The EMTs were so used to coming to our house they remembered his name and what it looked like the last time they were there.  We had two ambulance rides to the ER.  We had multiple ER visits, countless blood work, EEGs, CT scans and doctors visits.  They couldn't find anything "wrong".  In October of 2021 he had multiple "seizures" one after another.  We couldn't get them to stop, this was new.  We were sent to Rochester by ambulance.  We FINALLY were able to catch these "seizures" on the EEG.  Good news, they were not seizures!  Bad news, we were told these were just unexplained spells that sometimes infants have and he would grow out of them.  The unknown of the unexplainable didn't sit well with us, we wanted answers.  We were able to find a Neurologist that was willing to do genetics testing.  It came back that he had a gene mutation.  He was officially diagnosed with Alternating Hemipelgia of Childhood.  

Alternationg Hemiplegia of Childhood (AHC) is a very rare neurological disorder.  It is caused from a gene mutation, that is not inherited.  This disorder affects one in a million children.  Even though this disorder says childhood, this is something Daxton will have and struggle with his whole life.  AHC is recurrent episodes of temporary paralysis, it can affect one or both sides of the body.  These episodes can be involuntary muscle and eye movements, muscles becoming very stiff or limp and even seizures.  50% of people with AHC also develop epilepsy at some point in their life.  These episodes can last from minutes to days to weeks.  Recovery takes time!  Having these episodes can also lead to cognitive and physical delays.  Skills that have been learned can permanently be lost after an episode.  

AHC has no cure!  We MUST raise awareness and funding to find a cure!!  The sooner we find a cure for Daxton and other children with AHC the better! 

Donations will go to AHC foundation and will be used for research for this disorder and to support families with children who have AHC.