Girl Who Loves Books Forgets Words Immediately After She's Read Them Due To Rare Condition

Serena Jacques' suffers from short term memory loss.

01/07/2016 12:32

A girl who loves books has a rare condition which causes her to forget words as she reads them and has to re-learn them each time. 

Serena Jacques, eight, suffers from a condition that is known by medics as "2p25.3 Microdeletion", but does not have a name that is publicly recognised.

It causes global development delay, short term memory loss, speech and language problems, as well as some physical disabilities.

Her mum Jeni Jacques-Williams said Serena's condition can be a worry because it means she has no sense of stranger danger and is "overly friendly" to everyone she meets.

Caters News Agency
Serena Jacques and her mum Jeni. 

The 37-year-old mum said her daughter's condition also makes her limbs rubbery and bendy and she has hypermobility in her shoulders.

"Because of her condition, Serena can count and is learning to read but she will forget numbers and words as she goes along," Jacques-Williams said.

"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.

"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."

Despite her mum noticing signs of her late development, Serena was only diagnosed with the condition in 2015.

As it is so rare, the family have been told it's unlikely a cure will ever be found.

Serena was held back a year at school to give her a chance to catch up with the other children and she is now in Year 2 instead of Year 3.

And while Serena's six-year-old sister Felicity has already overtaken her at school, Jacques-Williams said her "friendly and compassionate" daughter is "amazing". 

She reads her school books every single night and her mum also reads her bedtime stories.

"Serena was very late in learning to talk and you could tell she'd get frustrated because she couldn't express herself," the mother 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.

"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 finally have a diagnosis for her but it was heartbreaking 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."

Caters News Agency

Jacques-Williams is hoping to raise funds and awareness of the rare condition her daughter has, and has teamed up with rare chromosome disorder charity Unique.

Craig Mitchell, chief operating officer of Unique, said: "Children with rare chromosome disorders can be affected in a variety of different ways, from severe learning and physical disabilities to communication problems and developmental delay, as well as more subtle issues.

"Serena's condition is very rare, although short-term memory problems have been seen to affect a relatively small number of other Unique members with different rare chromosome disorders.

"By collecting and sharing information, we hope to increase the knowledge and understanding of these disorders."

21 Rare Diseases

Also on HuffPost

Suggest a correction