Robin gave birth to her daughter Ever with no complications. Everything went off without a hitch. But just hours after she and Kirk brought Ever home from the hospital, she began experiencing feeding and digestive issues. They noticed that no matter what they did, she was always unhappy.
The worried parents went from relief and gratitude to knowing something was definitely wrong.
At 3 weeks old, Ever was diagnosed with GERD, a severe type of reflux disease. With the right medications in place, her digestive issues disappeared. Robin and Kirk were thrilled to see their daughter’s particularly happy demeanor emerging — but they also realized she was missing her important milestones.
Again, Robin and Kirk knew something was wrong… but this time, it was something entirely different.
Right after Ever’s second birthday, Robin and Kirk learned she had Angelman syndrome, a rare genetic neurological disorder that causes developmental delays and neurological problems.
One of the main symptoms of Angelman syndrome is the ability to function on a minimal amount of sleep. Ever, now 3, can survive on just one hour of sleep a night! She’s even been known to sleep at 20-minute intervals.
Since Robin and Kirk are Ever’s primary caretakers, the unconventional sleep patterns are extremely challenging. “If we can get anywhere from four to six hours out of her in a night, we feel like we’ve done good,” the parents said.
Watch the video below to learn how the tired parents cope with Ever’s disorder, and please SHARE their story with your friends on Facebook.
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