Eight-year-old Serena Jacques loves to read.
She’s quite the bookworm, which is remarkable since she suffers from a rare condition that means she has to re-learn words every single day.
That’s because she suffers from a condition that’s so rare it doesn’t even have a name, and will likely never have a cure. It causes many problems, including global developmental delay, speech and language difficulties and short term memory loss.
“She can count and is learning to read but she will forget numbers and words as she goes along,” mum Jeni told Kidspot.
“For example, she’ll be reading a book and can read the same word on each page but when she gets to the end of the book she’ll have to learn the word again because she won’t remember it.”
Unfortunately, Serena’s issues mean that she’s behind other kids of the same age.
“She doesn’t use her tenses right either, we’ve been told by specialists that her intelligence level is more like a five-year-old.
“When Serena was two I noticed that she was a bit different, she didn’t seem to achieve regular milestones like walking or talking.”
Serena’s condition is known by medics as 1p25.3 Microdeletion, but doesn’t have a name that’s publicly recognised.
While her six-year-old sister Felicity is in a higher class at school, Serena is doing well, particularly with her reading skills.
She doesn’t let her short term memory loss stop her from enjoying stories, citing Room on the Broom as her favourite book.
“Serena was very late learning to talk and you could tell she’d get frustrated because she couldn’t express herself,” she said.
“Now you can ask her how she’s feeling and she’ll tell you that her brain isn’t working properly or isn’t doing what she wants it to.”
While her reading skills are strong, Serena is overly-trusting so mum Jeni worries about her socially.
“Now you can ask her how she’s feeling and she’ll tell you that her brain isn’t working properly or isn’t doing what she wants it to.
“Because of her condition she’s just so overly friendly and innocent – you can’t take your eyes off her when she’s out because she could easily walk off with anyone.”
“I’m glad that we’ve finally gotten a diagnosis for her but it was heart-breaking as well, there was a real grief for her hopes and dreams that may never happen now because of the condition.
“But that’s just her future now and we’ll learn to deal with it. She’s such a lovely girl though and she’s so friendly and compassionate it’s amazing.”