‘Cruel’ syndrome can’t stop Karyn from living
KARYN Griinke was never meant to live beyond her childhood.
Diagnosed with the rare Wolf-Hirschhorn syndrome when she was 14, Ms Griinke has depended on others her whole life, robbed of the ability to walk, eat, and communicate from birth.
Now almost 39, Ms Griinke has become a medical marvel, defied all the odds of survival and has become an inspiration to young people and their carers going through similar challenges.
A beacon of hope for children and their families grappling with the same devastating diagnosis, Ms Griinke and her mother have been invited to a conference in Port Lincoln, South Australia, to prove a diagnosis with WHS doesn’t guarantee a death sentence.
The annual event brings together children diagnosed with WHS and their parents and carers, to connect with others who understand their triumphs and challenges being impacted by the disorder. Along with a myriad of physical and intellectual disabilities, those diagnosed with it rarely make it beyond their teenage years.
Ms Griinke’s mother, Sue Carr, said it was impossible to find a diagnosis for her daughter in the early stages of her life.
Since she was born, Ms Griinke has had in excess of 20 surgeries and, with her little immune system, contracted what became lifethreatening illnesses.
But she fought through them all.
“We can’t kid ourselves, it’s not all love that’s kept her alive,” Ms Carr said.
“Certainly with the medical intervention, they have a much longer life than what would have been normal for them in the world.”
Ms Carr said the lifechanging conference was an important event for children and carers like her and Karyn.
“If you take us out of the equation, it’s important for others to see Karyn, to see that she’s still alive and kicking and doing well despite her mammoth disabilities intellectually and physically,” she said.
The fundraiser was launched by Annjenetta Hooper-Burns from Perfect Finish by Annje, who was touched by Karyn’s story.
The funds raised from a raffle with more than a dozen prizes will go directly towards sending Ms Griinke to the conference.
“With all the donations, so many people have jumped on board and it’s just made my heart so full,” Ms HooperBurns said.
“Helping Karyn get to this conference – this could be her last because she’s outlived the odds of people with this syndrome.
“I was amazed with the support from our community and the response to help fund-raise money for this lady.”
To purchase raffle tickets or donate to the cause, send a message to Annjenetta Hooper-Burns on Facebook or contact Sue Carr on 0402 919 575.