TERMINAL ILLNESS 'FIVE YEARS TOO LATE'

20-year-old first began to struggle to walk as a teen but family say symptoms of rare disorder were dismissed by doctors

- ELLIE GOSLEY

LIKE many other teenage girls her age Jessica Cowley was an outgoing and active young person.

She enjoyed spending time with her family, riding horses and taking part in gymnastics. She had previously been diagnosed with epilepsy and a learning disability but this didn’t stop her living a happy and healthy life.

However, one day the teenager from Maesycoed in Rhondda Cynon Taf was enjoying shopping in Pontypridd town centre when her legs became so tired and painful that she had to sit down wherever she was to take regular breaks.

"She couldn't wait to find a seat - she would just have to sit down wherever she was," Jessica's mum, Rachel, explained.

"She would sit in the middle of a shop on the floor until she had enough energy to walk again. We were stopping every couple of minutes."

The mobility issues gradually worsened over the coming months. Jessica would fall when she tried to get up off the sofa but wouldn’t put her hands out to protect herself. Understandably concerned, Rachel took Jessica to see doctors but says the issue was just “dismissed” as growing pains as she was able to take a few steps in front of them.

"My youngest son was born in 2020 and she was still able to walk then but she was dropping to the floor all the time," Rachel said.

"We had family photos taken but all the kids are on the floor because Jessica couldn’t stand for long periods without falling over."

As well as watching her daughter lose the ability to walk, Rachel has watched Jessica slowly lose her voice.

Now, at just 20 years old, Jessica is largely confined to an electric wheelchair, is unable to eat for herself, is unable to speak and has bladder control issues. She is also starting to have dementia-like symptoms.

Despite these drastic changes doctors could not give Rachel any answers.