Easton's challenges with Angelman Syndrome

Angelman Syndrome is a very rare Neuro-Genetic Disorder that is caused by an abnormality in the UBE3A gene within the 15th chromosome.  While a common characteristic is a very happy and excitable demeanor, many with AS experience severe seizures, feeding difficulties, delays in reaching developmental milestones, problems with movement and balance, and little to no speech. 

Easton’s story:

My nephew and niece started to notice a developmental delay in Easton around 6 months of age (not achieving those little milestones we all look for in babies).  Doctors were apprehensive to initiate any testing and/or research until around a year old.   His abnormal EEG was found at 13 months when seizures began and went directly into epileptic status which hospitalized Easton.  Two weeks later, genetic results were revealed, notifying Trent and Steph they were dealing with Angelman Syndrome along with Lennox-Gastaut Syndrome (severe epilepsy).

We all know Easton to be the sweetest and happiest boy with the most contagious laugh.  His everyday life is very challenging dealing with sleep and feeding difficulties, gastrointestinal issues, continuous weight loss and multiple seizures daily.  He sees four therapists a week and is making great progress with what we all call “his inch milestones”.  He loves his momma and daddy, his new puppy Remi, Finding Nemo, and his calming 4 favorite songs.

Easton’s Therapists, Trent, Steph and Easton are all utilizing the functionality of an I-PAD with photos of all his favorite things as a source of daily communication.  So far he is responding amazingly. 

There are many resources Trent and Steph can utilize that will assist and improve Easton’s quality of life.  Support and proceeds will go to:  out-of-town hospital expenses, medications not covered by insurance, and necessities for everyday life. 

Thank you so much for taking your time to read about our baby boy, Easton and for your generosity and support!