This week a young Parkes girl will be the face of an international awareness campaign for a disorder that has at different times rendered her unable to walk, speak or swallow.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Fifteen-year-old Isabelle Smith was diagnosed with Functional Neurological Disorder (FND) last year after weeks of fainting episodes and seizures.
"I was just sitting down eating my lunch at school and I passed out," she said.
"I went to the hospital to get checked out and they found a heart condition called Wolf Parkinsons White.
"It was a little bit stressful because we thought the heart condition was causing the fainting. We went from Parkes hospital to Orange and then to Westmead but they eventually ruled it out and sent me home with follow up appointments."
Isabelle said she fainted quite a few times and had numerous seizures.
"The longest one was three hours," she said
"It was like my body was just a shell and I was stuck inside, I could hear everyone talking but I couldn't respond.
"It gets easier because you know that it will end eventually, you just never know how long it will go on for."
It wasn't long before Isabelle developed her next FND symptom.
"The left side of my body went completely numb," she said.
"So we went to the hospital again and were sent to Orange because they thought I'd had a stroke.
"The did an MRI and all those tests but couldn't find anything.
"They thought it was probably a pinched nerve and sent me home again.
"But after a week or two the numbness still hadn't gone away and my foot was actually turning purple and was really cold from lack of blood flow."
Isabelle and her parents Kate and Graeme decided they had better do something about it, so Isabelle and Kate jumped on a plane and flew to Sydney.
"I took her to the emergency department at Westmead Children's Hospital and said 'there is something wrong with my child'," Kate said.
"That's when she was diagnosed."
FND is a condition where patients experience a broad range of neurological symptoms such as movement disorders and sensory issues.
Essentially, there is a problem with the functioning of the nervous system sending and/or receiving signals from the body.
Isabelle said her disorder seems to cause one main symptom and as soon as that one ends she moves on to the next.
"And the next one, and the next one, it's never ending and it changes very suddenly," she said.
"The seizures and fainting stopped for a while and I thought 'great, I'm cured!', but the next thing I know, I'm getting out of the car one afternoon after school and I couldn't move my legs - so I spent the next three months in a wheelchair."
That symptom disappeared gradually over a few days.
"One of the last things my pop said to me before he died was 'hurry up and get out of that chair, we are going to be racing up and down the hallway'," Isabelle said.
"At his funeral I was determined to be respectful and stand up.
"I was able to hold on to my chair and stand for a few minutes and gradually over the next few days I began to hobble around.
"I was very relieved but at the same time I was thinking 'what's next?'.
Isabelle did not have to wait long.
Before the paralysis completely disappeared the next symptom arrived.
"I was in my room and I bumped something over and I went to swear but nothing came out," she said.
"I was thinking 'what's this about?'. I was trying to shout but nothing was coming out.
Isabelle wrote "I can't talk!" on a piece of paper and took it out to her parents.
"She never stops talking so that was my favourite symptom," Kate laughed.
"It was strange though because she couldn't speak but she could sing.
"And when she was starting to walk again and she was wobbling all over the place, she could walk backwards perfectly normally."
Isabelle had her voice back within 24 hours.
The next one appeared not too long later one night at the dinner table.
"I was chewing and I realised I couldn't swallow," she said.
"I'd never heard of that symptom so I thought it's not FND, it's probably asthma and my throat is a little closed over. I was getting really annoyed because I love food so much."
Eight days later, after a few trips to Parkes and Orange hospitals, a feeding tube was inserted.
Now, five weeks later Isabelle is still being tube fed.
"My voluntary swallowing mechanism has turned off," she said.
Kate said Isabelle was fortunate to have been diagnosed so quickly.
"The doctors and medical staff have all been wonderful but not everyone is familiar with FND and they aren't always sure how to treat her.
"We are lucky there is a name for it and we have been able to connect with support groups and other FND sufferers.
"We just manage it the best we can."
It was through one of the support groups on Facebook that Isabelle was invited to be the face of World FND Week.
"I posted a video of Isabelle singing on the FNDHope Facebook page and they messaged me and said they wanted her to be the face of the campaign," Kate said.
Isabelle is very passionate about raising awareness around FND.
"If I had known of someone my age who had this when I was diagnosed, it would have been a massive relief," she said.
"Hopefully I can help someone else going through something similar.
"It's actually quite common, however there is quite a bit of stigma around it and I presume that's why it was kind of looked down upon within the medical profession when it was first discovered.
"This has led to pretty much no research being done since and therefore a lack of awareness."
Even before Isabelle was diagnosed with FND she had aspirations of becoming a doctor.
"I've had an interest in the Emergency Department for a few years," she said.
"It would be nice to be a doctor with FND.
"It would be nice for people with FND to be able to see a doctor they can relate to so there is no judgement.
"Sometimes I feel like they are thinking 'we can't see this so therefore it is not real'."
The awareness campaign runs from Sunday, April 7 to Saturday, April 13.
You can keep up to date with Isabelle on her Facebook page Isabelle's FND Journey
Check out Isabelle as the face of World FND Week at www.fndhope.org and on Facebook @FNDHOPEAU and @FNDHOPE
Use #FNDAWARE
Read also: