Penny Mylchreest was less than two days old when she suffered her first seizure, and her parents never could have guessed that more than 1,000 would soon come.
According to The Daily Mail, in the first six weeks of her life, Penny managed to survive 1,000 seizures.
Becky and Andy, Penny’s parents, later revealed that doctors were in a race against time to make sure that Penny’s brain wasn’t permanently damaged.
Once Penny was finally diagnosed with a rare genetic disorder and placed on life-saving medication, her life improved significantly.
Now her parents are telling Penny’s story to warn others about the rare genetic order that nearly took their little girl’s life.
“There were times we wondered whether she would survive,” Becky said.
“Yet now, when I look at my beautiful daughter who wins everyone over with her killer smile, it is nothing short of magical,” she added. “Penny is delayed in her development but we are hoping and praying that she will go on to have a full and normal life.”
Becky and Andy noticed something off with Penny almost immediately after she was born.
“I noticed Penny had gone stiff and turned a funny colour,” Becky said. “She’d gone blue. My heart was in my mouth as I shouted to a midwife to pick her up because I couldn’t move quickly enough after having the Caesarean.”
“I was in total shock, it didn’t seem real,” she added.
In the first few weeks of her life, Penny suffered up to 30 seizures a day.
“Each fit started with an horrific, gut-wrenching scream,” Becky said. “Her body convulsed and shook, her eyes rolled back and her head fell to one side, before she became totally still, it was so upsetting to see.”
“Fortunately, the nurses were amazing. There were times when Andy and I felt it was all too much and that’s when they told us that Penny was a fighter – but that she needed us to fight for her too,” she added. “It wasn’t just the physical care they gave to the babies, but the emotional care they gave to parents too.”
Penny was ultimately diagnosed with Benign Familial Neonatal Seizures, a rare genetic disorder caused by a mutation of the potassium gene.
After trying several different medications, she was ultimately given an anti-epilepsy drug—and it worked.
Ever since she was successfully diagnosed and given proper medication, Penny has not suffered a single seizure.
