AlicE’s Story
Alice Eileen Silver was born on November 4th, 2020. She entered this world with a sort of elegance to her. We fell in love all over again. She was sweet, calm and healthy - at least so we thought.
A little over a week after she was born, before getting ready for her night time feeding, she went cross-eyed. Nothing out of the ordinary for a newborn - but she quickly became rigged with stiffness and arching so significantly it was impossible to try to feed her. Her mouth was open in a way that you would’ve thought she wanted to be fed but seemed too frozen to try to swallow. This lasted for about 4 minutes until it just stopped, she instantly relaxed and looked as though nothing had just happened. Google immediately brought up the word seizure making time freeze for a split second before she was in her car seat and on the way to the emergency room. After a few hours the doctor said it was more than likely acid reflux and sent her home. Another week passed and it had happened again, this time caught on video. Four days later, same thing happened. After many frequent trips to the pediatrician, with videos and trying reflux medicines, with no improvements he referred her to a pediatric neurologist.
After meeting the neurologist and reviewing the videos, she wanted to do an hour long EEG to rule out any seizure activity. Alice was sent home to wait for the results. About an hour after being home and JUST getting all the “gunk” out of her hair from the EEG probes, Alice had a BIG episode - resulting in a call to 911 and an ambulance ride to the hospital. Once there she was admitted overnight. The one hour EEG results had come back normal so they decided to do a 24 hour EEG, MRI, and lots of blood work. Everything came back normal besides an elevated liver level, but nothing too concerning. There she was diagnosed as having Complex Partial Seizures and given anti-seizure medicine with a follow up in 4 weeks. There was hope that she could grow out of this.
4 weeks later - The neurologist suggested genetic testing. This would give a better look as to what is going on in Alice’s brain, and what is to come. A little over 20 days later we got our answer, something that made sense of what seemed inexplainable. “She has an ultra-rare neurological disorder, ATP1A3 - Alternating Hemiplegia of Childhood (AHC). She is one in a million, literally. There is no cure.” Another pause in time. The neurologist described everything that she knew about this extremely rare disease. She advised to join support groups and pages through social media to find comfort. Help spread awareness and hope for a cure.
Hope went from being a word filled with brightness and confidence, to being dark and weak. Mourning the loss of not only the future planned as a family, but the future dreamed of for Alice. Life after diagnosis for most AHC families is a battle. There are good days and bad days. Living in the unknown and having only hope to get you through each day.
Alice is more than her diagnosis and she will be one of many to help change this world.
DONATE
HELP FUND A CURE BEFORE IT IS TOO LATE.
BE APART OF SOMETHING GREAT.
WE NEED YOU.