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This is a devastating disease that affects only one in 60,000 children. The babies are called “party kids.” However, the statement is completely misleading. This term comes from the fact that children can stay awake for days.
Little Grace-Louise Darrochs from Houston, Scotland, also suffers from “party baby syndrome.” She was only seven weeks old when she had her first seizure. After weeks of tests in hospital, parents Leeann, 35, and Alex, 42, were informed that their daughters suffered from CDKL5 deficiency disorder. An extremely rare form of epilepsy.
“I was sure they were wrong.”
The genetic defect greatly affects the growth of the brain. Grace-Louise will probably never be able to talk properly, walk or use her hands. Added to this are serious sleep disorders; This means the now three-year-old remains awake for five to six days at a time.
Leeann was shocked when doctors told her family about the results. “Other than the seizures and a few digestive issues, he behaved like a ‘normal’ baby. “I was sure they were wrong,” the mother told the Daily Record.
“He should have the chance to enjoy life”
Grace-Louise is now fed through a tube into her stomach and relies on walking aids. He may be very active for a long time and then need little or no sleep. Leeann added that the situation was “exhausting for the whole family.” The parents take turns looking after Grace-Louise in the living room so their other three children can sleep.
In addition to long waking phases, there is also the other extreme. “When he has severe seizures, he can sleep for days and rarely wake up.” Parents now want to raise awareness about this rare disease and hope that one day a cure will be found. “He should have the chance to enjoy life.” Today, there is not even an effective medication to control seizures. (dmo)
Source : Blick
I am Dawid Malan, a news reporter for 24 Instant News. I specialize in celebrity and entertainment news, writing stories that capture the attention of readers from all walks of life. My work has been featured in some of the world’s leading publications and I am passionate about delivering quality content to my readers.
