Ever didn’t want to eat and was unhappy all the time. Whatever Robin and Kirk did, they couldn’t make their daughter stop crying. And she never wanted to sleep.
The doctors examined Ever and diagnosed her with gastroesophageal reflux disease (GERD), a digestive disorder that causes stomach acid to flow back into your food pipe. The condition is treatable with medication, and Ever became much happy after she started taking medicine.
But it didn’t take long before Ever’s parents realized that there was something else wrong with their daughter.
Ever didn’t develop as quickly as other children and she never slept. But even though she didn’t sleep, Ever was cheerful and happy.
“She was almost too happy,” Ever’s mother told Barcroft TV.
Her parents, on the other hand, never got any sleep and didn’t understand why their daughter was so active. Robin and Kirk once again realized something wasn’t right, and this time it wasn’t just a stomach problem.
“We wondered if it was due to her difficult start in life or if there was something else behind it.”
Ever had just turned two when she was diagnosed with Angelman syndrome, a rare genetic and neurological disorder whose symptoms include developmental delays, speech impairment, and sleep problems.
While knowing the reason didn’t help Ever sleep more, at last Robin and Kirk knew why Ever slept so little.
“I’d never heard of Angelman syndrome. It’s so strange to have never heard of something that in an instant can become your whole world,” Robin says.
Today, Ever is three years and very happy. Sleep is still a big problem for her parents, who are happy if they manage to get four hours a night. Sometimes, Ever only sleeps an hour a day, but she’s still happy. She hasn’t started talking yet. And according to doctors, she might never. But still, Robin and Kirk have hope.
“She’s amazing. Nothing gets her down and nothing stops her and she never stops trying. People ask us if we hope for a cure. We do, but maybe not for the reasons that people think. We think she’s amazing and we think she’s perfect. Why we would want a cure is more to make her life easier for her.”
What a wonderful little girl! I really hope Ever will be accepted as she is when she grows up and continues to be the ray of sunshine she is today!
Please share Ever’s story if you were also moved by this little girl.