Meet the Baby Who Only Sleeps One Hour a Day

Robin and Kirk Odette-Hiscoe from Ottawa, Canada, eagerly awaited becoming parents. When the long-awaited moment finally arrived and the doctors told Robin she was expecting a girl, she was overjoyed. "During all the prenatal tests, the doctors assured me everything was fine. I had no reason to suspect anything was amiss," she recounted.

However, just hours after their daughter's birth, Robin and Kirk realized something was wrong. "She didn't want to eat, cried constantly, and was always unhappy. Worst of all, no matter what we did, she just wouldn't sleep."

Initially, doctors suspected gastroesophageal reflux disease (GERD), a digestive disorder that causes stomach acid to flow back into the esophagus. "They prescribed medication, and we saw some improvement, but still, our daughter couldn't sleep for more than one hour a day."

Sweet Ever as a baby

It wasn't until she turned two that the little girl was diagnosed with 'Angelman syndrome,' a rare, inherited neurological disorder characterized by developmental delays, speech impairments, and sleep disturbances. "I had never heard of Angelman syndrome. It's so strange that I was unaware of such a condition that could turn my whole world upside down in seconds," Robin says, highlighting the importance of raising awareness, especially among young, inexperienced parents.

After an extended period of treatment, their daughter's sleep still poses significant challenges for her parents – but Robin and Kirk remain hopeful. "Today, Ever is three years old and happier than ever. While we still don't get a full night's sleep, we are grateful for the four hours we do manage to get. It's true that sometimes the issue worsens, and Ever struggles to sleep more than an hour a day, and she still hasn't started speaking – doctors say she might never be able to – but we have hope. We see that Ever is much happier than she used to be, and that gives us strength to keep fighting the illness alongside her.

"She is incredible. Nothing brings her down or stops her. She never complains, and she never gives up. People ask us if we believe in a cure for her, and I think that's not really a question. Of course, we want her to be healthy and are waiting for a treatment that will ease her life, but even now we see her as perfect, and we feel blessed to be her parents."