MUST READ: Prayer and donations for rare disease victim from Newcastle
Marlie Jones was stricken with the rare syndrome after a stroke, and requires specialised equipment to ease her plight.
On September 11 last year, Marlie Jones was hospitalised after a stroke.
Three months into 2017, she remains under constant care after being diagnosed with the rare disease known as Locked-in Syndrome (LIS).
Marlie is effectively a prisoner in her own body.
The Advertiser met with Stan and Sammy Jones, plus Andy and Ansie Smith – family who explained what led to their beloved Marlie falling so seriously ill.
Stan, Marlie’s husband said she was in the Intensive Care Unit for four days after the stroke.
After two Magnetic Resonance Imaging (MRI) scans and consultation with the same specialist who assisted the late Joost van der Westhuizen, the diagnosis was clear.
“The stroke was on the brain stem, and it stopped regulating all functions. She can blink, but cannot talk or move any muscles. She understands when you speak, but can only communicate with eye movement.”
Mr Jones said the doctor had explained to him, less than one per cent of the world would suffer from LIS, and there was no cure yet.
Some came right on their own, while others lived paralysed for the rest of their life.
“We need a miracle for Marlie.”
Friends of the family have created a Facebook page titled ‘Pray for Marlie’, while Jordan Pine and Margie Dowling created a fund (Help Marlie Campaign) on Back A Buddy, a South African fundraising service.
Family of Marlie said they have been blessed with unexpected assistance.
“We thank those who have contributed; words can’t express how grateful we are. In the world today, you can’t believe there are still people out there who care,” said Mrs Smith.
The Back A Buddy page was created in light of the huge medical expenses facing Marlie’s family – a specialised wheelchair with adequate back support costs approximately R23 000.
The family also hopes to help Marlie communicate with a specialised screen.
The device will track her eye movement with a cursor on the screen, and must be imported from overseas at between R50 000 and R60 000.
“These amounts are just ballpark figures. We have requested quotes for these items.”
All funds raised through the Help Marlie Campaign will go toward the wheelchair and communication device, as well as assisting with medical costs.
Marlie’s care costs about R9 000 per month, an amount not fully covered by medical aid.
“We are taking it day by day, and as it comes,” Stan concluded.
For further details or to contribute towards Marlie’s cause, visit the website: https://www.backabuddy.co.za/champion/project/help-marlie-campaign#.WLPU7vhI_P4.facebook
The Facebook prayer group is Pray for Marlie – all are welcome to join.
By Wednesday afternoon, the funds raised through Back A Buddy were a shade over R25 000 – thank you to all donors!
