Robin gave birth to her daughter without any complications. The doctor said she was absolutely perfect! In fact, Kirk captured his wife and baby in their first minutes together at the hospital. But when something started to change, nothing prepared them for the unexpected news.
When baby girl Ever was born, her parents Robin and Kirk were over the moon and couldn’t wait to take her home, but then they grew concerned. Their baby was very uncomfortable and never happy. No matter what they did, they couldn’t make her feel better.
Ever was constantly crying, and so Robin and Kirk took her back to the hospital where they discovered she had GERD, an intense form of acid reflux. With treatment she seemed to be getting better, and her parents were so happy that there was a solution.
Then Ever became too happy, and she began missing major milestones. It was then discovered that their baby had Angelman syndrome. This rare genetic neurological disorder was responsible for her developmental delays, as well as her neurological problems.
Babies with this syndrome can function on very little sleep, some requiring only one hour of sleep per night. It can also make them drowsy during the day, affecting their ability to function. There is no cure for this syndrome, which can be frustrating.
Unconventional Sleep Patterns
Ever is 3 years old no and barely sleeps 20 minutes at a time, causing her parents great distress. The two are finding it hard to function on interrupted sleep every night. “If we can get anywhere from four to six hours out of her in a night, we feel like we’ve done good.”
Ever is developmentally delayed for a 3 year old, but is a very happy girl. Her walking and talking is behind what a typical three year old is usually at. Her parents are hoping for a cure someday, just to make Ever’s life easier on this earth.