‘I was diagnosed with Alzheimer’s at age eight’ Aussie teen’s health shock
Diagnosed with Alzheimer’s at just eight, brave teenager Jessica is determined to live a long and fulfilling life
Jessica Sheehan was supposed to be dead by now. At least, that was the prognosis 10 years ago when doctors diagnosed the now 18-year-old with the incredibly rare Niemann-pick disease type C (NPC), commonly dubbed childhood Alzheimer’s.
Having outlived expectations, the bubbly blonde from Perth is now hellbent on getting married and having children, despite her failing memory.
“I feel more confident about staying around now I’ve outlasted the prediction that I’d be dead at 16,” says Jess.
With a memory “like a sieve”, she lives with the help of a to-do list on her phone, but has to set a reminder alarm to look at the list, or she forgets it’s there.
“Mum leaves me lists of jobs to do at home sometimes, but I’m so forgetful I’ll put the washing on then not remember to put it out,” shrugs Jess, whose symptoms have been gradually getting worse since she was diagnosed at just eight years old.
“I try to be the strong one, always putting on a brave face in front of Jess,” adds her mum Trina, 48. “But I get in the shower and melt in my tears sometimes. She doesn’t read books anymore, which is sad, because she can’t remember anything she’s read when she picks it up again.”
NPC is estimated to affect only 500 people worldwide and is fatal, with few sufferers living past 20. Other symptoms include loss of mobility and body functions closing down.
For Jess, it’s not just her memory declining – her speech is slowly slurring, her muscles are deteriorating and her hands started shaking when she was 14.
Now on a year-long trial of new drug VTS-270, she flies to Melbourne every two weeks for infusions into her spine. It’s hoped the drug will slow the progression of the disease. She also takes 14 tablets daily to keep symptoms like epilepsy at bay.
“On a bad day, Jess is vague and stares through you, and she can sleep all day,” says Trina. Still, having finished school, the hopeful teen is determined to live life to the full and would like to get an administrative job. “I’ll just have to make lots of lists,” Jess laughs.
‘I’m so forgetful I’ll put the washing on then not put it out’